Baby Jackson

My birthday/ Jackson's day in the hospital

2009-04-23T18:58:00.000-07:00

Ok I am going to start at the very beginning, but summarize. About 4 months ago Jackson had a bout of horrible abdominal pain. He basically grabbed his tummy and was literally screaming in pain. After a couple of hours of this and a few treatments, like gas drops and a laxative, even though he had had no problems having a bm, we took him to the ER. By the time we got there he was a lot better, by the time someone actually came to check on him he was almost completely better. They said it was probably gas or something else non significant and sent us home with no treatment or test. At the time we pretty much agreed with them. We didn't given this much more thought. On Saturday he did the same thing again. This time it lasted for 6 hours, he also got cold and clammy and pale. We were hesitant to take him back to the ER because they said it was nothing last time. We were getting worried and decided to take him to the hospital. As soon as we got in the car, he was fine. I am not talking about a kid who is a little better or getting better he was totally fine, he did not look or act like he had been in any distress of any kind ever. So we turned around and went home, and back to bed. We actually joked that we had another four months until the next episode. We also discussed that if it happened again we would go straight to the ER because maybe if they saw him in pain they could help more. When he did it again on Wednesday (AKA my 30th b-day) Adam took him to the ER pretty quickly. We took him to a local ER. I think this was a big part of the answer because they were not too busy to actually look and him and try to investigate to figure out what the problem was. While we were talking to our nurse practitioner I asked about the possibility of a kidney stone, she said kids don't typically get kidney stones, and the symptoms were a little off also. She decided to do an x-ray of his tummy to see if she could see anything abnormal. She did She came back and said it looked like 4 kidney stones. She them ordered a sono and some labs. The sono showed 2 kidney stones and 2 gal bladder stones. The labs showed elevated pancriatic enzymes. (Gal stones can lead to pancreatitis which can be severe). She sent us to Children's at this point. Children's did some more testing and another sono. Long story short. They are not worried about the gal stones, although his enzymes are up they are not high enough to be classified as pancreatitis. They are actually only worried about 1 stone in his Kidney. It is roughly 1cm. That is absolutely huge for a kidney stone. It is way too big to ever pass, or even move out of his kidney. It is also too big to break up. He is going to have to have it surgically removed. We were very glad to hear that our kidney doctor did not find it necessary for us to stay at the hospital until surgery. He sent us home and we are supposed to hear from him tomorrow. They have given us pain medication in case he has another bout of pain. I do not know anything else at this time. I will have more answers soon and will post updates. Please send good thoughts our way. I know this was a long post sorry. Too tired for anything else right now
Love
Kimberly
Adam
and Jackson

Jackson's 3 years old

2009-03-18T18:15:00.000-07:00

Sorry it has taken me so long to post. I am posting some on Facebook. Ok enough excuses. I really have no updates. Jackson is doing amazing. He is very tall and thin, the doctor said is huge head is back on the charts. It was so big it had gone off but its back now. So I guess he is growing into his head. He is eating amazing and his speech is coming along nicely. He no longer qualifies for ECI. Which is both exciting and sad. We will miss our therapist very much. He goes to school for his therapy now and his teacher is Mr. Durham, he seems very nice and good at what he dose. He seems to really love kids. His party was great. We had so much fun. Jackson flew a kite for the first time he really liked it. I hope everyone who came had fun. He is getting so smart. He can spell; stop, exit, cat, dog, bear, and book. Well I guess that's all for now. I hope everyone is doing wonderful, and having a great year.
Love
Kimberly, Adam and Jackson

Happy New Year

2009-01-02T19:23:00.000-08:00

Jackson was spinning the tea cups

Welcome 2009. Hi everyone. As always there is no news here. Jackson is doing great. He eats anything we give him. His weight is the same but I am not overly concerned about that, he is just going to be tall and skinny like his dad. We had a great time in Disney, a Christmas we will not soon forget. I hope you enjoy the pictures. The one where we are all wearing glasses was when we were waiting to get on the new Toy story ride, its in 3D.
Love Adam, Kimberly and Jackson

Nothing to report

2008-12-05T19:20:00.000-08:00

Hi everyone, there is really no news to speak of, but I am being harassed about how rarely I update. He was the cutest puppy dog in the world for Halloween. Then the other day he asked to put on his costume, so I let him, then he wanted to play hockey in it, It was hilarious. My little hockey playing puppy dog. Jackson is doing wonderful, it seems like he is eating constantly. He is a little parrot and repeats everything we say. He is not really gaining weight, but he is not losing either. He is potty training and doing quite well. We should be out of diapers soon. I guess the only news is that we are going to Disney Land for Christmas. So I know I don't post much but I will definitely post pictures once we are back and settled in again. For those of you that are wondering how my lap-band/weight loss is going. i have lost almost 60LBS. I am including a before and after picture.
Love
Kimberly, Adam and Jackson

Post op

2008-09-30T07:27:00.000-07:00

Hi everyone sorry again for not posting in so long. Jackson had surgery to fix his g-button hole on friday the 26th, we also decided to have him circumcised at the same time. I was very worried about this surgery for some reason, but there was no need. He did so good it is like nothing has happened to him. He had surgery at about 10am and we went home around 4pm. He was very sleepy for a little while but by the time we got home he was normal Jackson. In fact he ate a thing of fries and half of Adam's drink on the way home. The next day we gave him pain medication just to slow him down, he was so active we were afraid he would hurt himself. He continues to eat more and more, he has even gained a pound. His speech is still behind and we are still getting ECI for that, but he seems to be improving on that every day. I have not downloaded pictures in a long time so there are no new ones to post. We have a fun filled couple of weeks planned and I will take lots of pictures and then update again.
Love
Kimberly Adam and Jackson

UH-OH!!!!!!

2008-08-15T16:21:00.001-07:00

Hi everyone. About a week ago Jackson walked into the the living room and told Adam uh-oh. Adam said what uh-oh and Jackson lifted up his shirt and his button fell out. Adam said UUHHHH-OHHHHH!!!!!!!!!!!!!! To make a long story short, after trying all day to get the button back in Adam was unsuccessful and we basically decided not to torture him with anymore attempts. (For those of you who don't know those holes start to close up pretty quickly.) Because Jackson had been doing good on his eating we decided to leave the button out. He still only eats a little bit at a time but it appears to be getting better. He does complain about his stomach hurting every now and then and we think it is because he is getting hungry. We are offering him all kinds of food anything to get calories in him at this point. We still think he has a good chance of staying off the feeding tube. He still has a small hole in his tummy that is leaking and causing some skin breakdown. We went the surgeon's office yesterday and got a cream to treat the breakdown. We have another appointment Wednesday the 20 th to decide if the button hole needs repaired surgically. I guess that is all right now. I hope everyone is doing well.

I am including some pictures of our wonderful vacation to Padre.

Love

Kimberly Adam and Jackson

P.S. If anyone in Houston still reads this we will be in town on September 13 th for the Texas Center for Fetal surgery reunion. We would love to see you guys while we are there.

Happy Independence Day

2008-07-04T08:06:00.000-07:00

HAPPY BIRTHDAY GREAT GRANDADDY MCDONALD!!!!!!!!!!!!!!!!!

Well I guess I should start by apologizing for not updating more often. It just seems like there is nothing to update on. Jackson is doing wonderfully. He eats a little bit more each day and we are hoping to be off the tube feeds in a couple of months. We are down to 3 feeds a day which is half of what we were doing a couple months ago. He is saying new words all the time, we continue to be amazed by him every day, we are so proud of our little man. I painted a chalk board in his room he loves it. He loves the ABC's so we write the alphabet on there, he can say a lot of his letters. We went to Branson last weekend with Adam's family. We had a good time. We rented a boat one day and went intertubeing, Jackson even rode on the tube. The next day we went to a place like six flags called silver dollar city. Jackson road all the kid rides and LOVED the frog and elephant rides, he asked to go over and over again. We are going to South Padre with my family in about a week. I can't wait to see Jackson at the beach. I guess that's all for now. I will try to post more frequently.

Love

Adam Kimberly and Jackson

Jackson's Birthday

2008-03-17T13:06:00.000-07:00

Ok so as always my post is running late. Jackson is officially 2, we celebrated at little gym. I think everyone had a great time. I was amazed to see how daring all the little ones were on all the equipment. We were more then thrilled that Jen and Audrey made the long trip to celebrate with us. It is always fun to see our little miracles together. Even though we had the best cake and pizza ever Jackson did not eat anything. He has eaten a couple more egg rolls and actually ate 3 cherry tomatoes the other day, but other then that no more eating. After 2 years I am still amazed everyday at what he went through and how strong he is and how strong he has had to be. But mostly how he has come through it all basically healthy normal and happy. I think about everyone who has helped us on this journey, from medical professionals to friends, and even people we never met who simply prayed for us, and am forever thankful., and amazed at the lives Jackson has touched and vice versa. Well I guess that's all for now.

Love

Kimberly, Adam and Jackson

HE EATS!!!!!!!!!!!!!!!!!!!!!!!!

2008-03-02T20:04:00.001-08:00

So a couple of days ago Jackson ate about 70% of a Jack-in-the box egg roll. We were so excited. We tried not to get too excited, thinking it may have been a fluke, but he did it again tonight. He also ate about 1/3rd of a chicken strip tonight. I know this sounds like a very unhealthy start to eating, but at this point we will take what we can get. I actually teared up a little tonight thinking that we may one day not have to tube feed him. That's all for now.

Love

Kimberly Adam and Jackson

Jackson is almost 2!

2008-02-29T09:24:00.000-08:00

Can you believe my sweet little man is almost 2. He will turn 2 on March 5th. He is getting so big. He is about 37 inches tall and weighs 26.5lbs. He is in the 95th or above for height and 35th for weight. I am a little concerned about his weight because he is not gaining weight, even though he continues to gain height. Another part of me thinks he is just going to look like dad, and be really tall and thin. He is basically on track for someone his age except for the eating and his language. Adam and I have noticed that he is trying to say more words, and think they will come with time. He has swallowed some things lately. He will eat a couple crackers and he ate 2 bits of pizza crust the other day. I think his eating is coming along and hopefully he will start eating better and better. He gave us a huge scare the other day. He is teething and like to chew on metal so he was chewing on our mailbox keys while he was being fed, which means he was laying down. He got them a little too far in the back of his throat and started to gag, so Adam sat him up to try to get the keys out and when he did the keys slid all the way down his throat. He called me into the room and I started to do the baby Heimlich, while Adam called 911. Jackson in the meantime was turning pretty blue. It took Adam a second to find the phone, he had dialed the 9 when the keys flew out of his mouth. Long story short Jackson is fine and his Mommy and Daddy were quite shaken for while. I thought Jackson would be the last child to choke on something being that he doesn't swallow anything. He just likes to keep us on our toes.

We took him to the Dallas Worl Aquarium. He had lots of fun. I am including some pictures. One is of Jackson and Daddy looking a manatee, and there is one of them looking at the sloth.

There is also a picture of him right after his first real big boy haircut.

We are supposed to close on our new house around March 20th. We are getting very very excited. There is no other real news. I will update after his party, and share all of our pics. Hope everyone is doing well. Thanks for reading.

Love

Kimberly, Adam and Jackson

Post Holiday update

2008-01-26T08:47:00.000-08:00

Our Holiday was great. It was kind of weird to move over Christmas but it is one we will remember for a long time. We went down to my parents' house a few days after Christmas. It was wonderful, to have the whole family together and for Jackson to get to spend some time with his great-grandaddy. Jackson loved all my parents' land and especially loved Bonnie their German Shepard. I really wish we could get him one but we already have two dogs and we won't have enough land for one. There is really no news as far as Jackson goes. He is a normal two year old. He is into everything. His new favorite game is to put anything (esp electronics) into water. So far he has put a digital camera, Adam's X-box wireless remote and my cell phone in the water. So if you have been trying to call me please e-mail me and I will let you know our new home phone. We went by the house that we are building the other day and it still looks like it will be about 3 months before its done. We are so thankful to Adam's mom for letting us stay in her house it is such a huge help.

As some of you may know I had Lap-band surgery on January 21st. I am recovering well, have already lost 8lbs. Aside from really wanting some real food I am doing great.

Thanks for keeping up with us.

Love

Kimberly, Adam, and Jackson

P.S. I watched them implode the hotel across from Texas Children's on CNN, It made me really miss everyone in Houston. I really want to come work down there.

WE SOLD OUR HOUSE

2007-12-13T12:27:00.000-08:00

Just a quick note to let everyone know. Our house sold over the weekend. They looked on Saturday morning we had an offer Saturday night, we counter offered Sunday afternoon and had a contract by Sunday night. They need to be in by the 31st of December so basically we have about 2 weeks to be out of our house. Which makes for a crazy Christmas. Everyone is doing good here. I finally went to the doctor for my "cold" and found out I had a pretty bad case of pneumonia. I had to be off work for about 5 days, but I am getting better now and I feel a lot better. Jackson's and Adam's colds went away and thank God they both avoided the pneumonia. That's about all the news for now. Happy Holidays everyone.
Love
Adam Kimberly and Jackson

I know it has been a long time

2007-11-28T12:13:00.000-08:00

O.K. so I have been told by many people that I must update. I am in very much trouble for not updating in so long. Basically nothing with Jackson has really changed. He is pretty much a normal toddler. He still does not take anything by mouth. He loves food though, anytime he sees food he reaches for it and lets us know that he wants some. We give him any food he asks for. He puts it in his mouth and chews and chews, then takes it out and puts it down. Usually he throws it at the dogs, the dogs love this, Adam and I don't share the dogs feelings on this. We have had a busy couple of months since the last post. Our house is on the market and we have decided to buy a house in Waxahachie, which we are very excited about. Just tired of keeping the house "show ready" and the stress of selling this house so we can get our new one. We took Jackson to the zoo in October and he loved it, he had a great time. He was a chicken for Halloween it was the funniest thing I have seen in a long time. It was very warm here on Halloween night and his costume was very hot so he only wore it for a little while. Thanksgiving was great. Jackson got to see his cousins and aunts and uncles and the food was wonderful. Between Halloween and thanksgiving we all got an awful cold. Adam got it first and brought it home to all of us. We are all still coughing, and have named it the never ending cold. The good news in all of this is that Jackson had a serious cold and handled it great. Even though he had a runny nose and a cough he fought it off great. He got over it better then I did. Like I said we are still coughing some but overall everyone is better.

Jackson is now 35.5 in tall and 25lbs. He is in the 95% for height and 33% for weight.

I guess that is all for now. Once again I am so sorry about not posting for so long. Happy Holidays to everyone, I hope everyone is doing well.

LoveKimberly, Adam and Jackson

Jackson's First Haircut

2007-09-24T20:18:00.000-07:00

Jackson basically had a mullet, and something had to be done. We took him to a place that specializes in hair cuts for kids. They could not cut his hair because he did not have shoes on. They said hair can in bed itself under skin and cause an infection. We were just going to take him back later when I decided that I could cut it myself, so I did. It looks pretty good, he looks totally different to me. He looks like such a big boy.

Reunion

2007-09-20T19:18:00.000-07:00

The reunion was wonderful. Jackson put my camera in the dog water bowl the day before so I did not have a camera and my mom's camera battery died so I do not have many pictures sorry. It was so great to get to see all of our old friends. We met some new ones too. We got to see baby Fin who was going on ECMO around the time we went home, and baby Suarez who went on ECMO shortly after we left. It was so amazing to see all these little kids who had been through so much having so much fun and just being kids, not "sick kids". We got to see some of our nurses and doctors and missed others. The one thing we did not expect to get in Houston was the cold. Jackson came home with a cold and then everyone in the family got it, we were all miserable but all fine now. Jackson reacted to the cold the same way anyone 18 month old would. It basically made him tired and snotty, but that didn't bother him. He has recently taken to putting things in the toilet which has been a wonderful experience. We caught him using Adam's hat as a ladle and scooping water up from the toilet to the floor. He was so proud of himself. He is still not really eating but we got him to eat 1/2 a package of baby food the other day in the afternoon then the other half that night. Nothing else since though. I guess that's all for now enjoy the pics.

Love,

Kimberly, Adam, and Jackson

Same old same old.

2007-08-30T09:28:00.000-07:00

Hi everyone. I am basically just posting because I realized it has been a really long time since I posted. Jackson is doing wonderfully. There are no medical issues as of late. He is walking everywhere and runs after the dogs. He is working on his vocabulary. He says dog, momma, da (for daddy), du (for duck) ba (for bailey). He is also trying to say yuck. He thinks yuck and grapes are the funniest words ever. His therapist say that due to the long intubation he does not use the back muscles of his cheeks and mouth very well, so he is having difficulty with certain sounds like ls, gs, and ck sounds. This is also what we think is keeping him from swallowing. He loves to chew food, but after he has chewed it for a while he takes it out of his mouth and throws it on the floor. All in all I will take this. He is at least trying, and his therapist are wonderful and I think we are making great strides forward. That is really all for now. We will be going to Houston for the reunion in September and we can not wait to see all of our friends there.

Love

Kimberly, Adam and Jackson

One year ago today

2007-07-30T20:13:00.000-07:00

O.K. so it is actually one year ago tomorrow, but I have to go to bed so I can work 12 hours tomorrow. So no news at all this post. Just saying HOOO-RAYYYY Jackson, he has been home one year (if you don't count the return trip in September for his 3rd repair). So that's all I really had today. I am so proud of my little man.

Love

Kimberly, Adam and Jackson

Jackson is WALKING

2007-07-19T08:54:00.000-07:00

Hey everyone sorry so long between posts again. We have been really busy. There is really no medical news. I never heard back from Houston about his neck, but the bump seems to be almost gone. I guess it was just a lymph node. Jackson started taking steps by himself Saturday the 14th. He only took a couple of steps but he doubled it the next day and then doubled it again the next day. I am so excited. I saw our pediatrician at work and told him and he was so impressed. Jackson even walked a little for his ECI therapist, she was also very impressed. Everyone says he is pretty much caught up and not really that behind. I am so amazed at my little man. He is so strong and he does not even know. We finally got to take a vacation. We went to my parents house and Padre Island. We were only at the beach for a couple of days, Jackson loved the pool water but he was not too fond of the beach. He would not let us put him down in the sand. We went with some friends and had a great time.

Baby Claire is doing really well, she is already home. She spent about three weeks in the NICU. She did go home with oxygen but I think they are already weaning the oxygen. GO CLAIRE!!!!!

Baby Audrey's billboard is up. If you happen to find yourself on the north end of Dallas on 75 keep an eye out. She is so beautiful.

To everyone in Houston we miss you and think about you guys all the time. Thank you so much again for everything. We are planning a trip to Houston in September for a Reunion hosted by Texas Center for Fetal Surgery. I really hope to see everyone.

Love

Adam, Kimberly, and Jackson

P.S. Happy very belated birthday to Great Grandpa Mcdonald.

Baby Claire is here

2007-06-08T08:35:00.000-07:00

Hi everyone Claire was born this morning, she did REALLY REALLY well after delivery, and is still very stable. Please Keep this family in your prayers.
On the Jackson front. We still have not really heard from Houston, they think it is a lymphatic malformation, but we have not really been told what that means. We took pictures yesterday you can view our proofs at www.bephoto.com They are amazing. If you live in the Dallas area and need GREAT photos at a GREAT price please use these guys. We used them for our wedding and for all the professional pictures we have of Jackson. These are really wonderful people. Once you get to the website you click view my session then family and children and we are under Adam Burgess.
That's all for now
Love
Kimberly

Another CDH baby

2007-05-31T19:49:00.000-07:00

Hi everyone. I found out today that a friend's dad's boss's child just had a CDH baby. Ok I know that that is hard to follow so we will just say a friend of a friend. I know nothing about this baby except that they are from the Dallas area and delivered in Houston. The baby is about 2 weeks old and on that very familiar (to some of us) roller coaster that these kids take us on. So please keep this baby and his family in your prayers.

MRI update
I sent a CD to Dr Olutoye in Houston, I got a call from his nurse manager Bella and she said the CD they received was empty. I was so angry. I am very concerned about this and want him to see it so I drive the hour the Children's then spend 20 dollars to overnight it and it ends up empty. I told all of this to the radiology people at Children's and they overnighted him a new copy. So hopefully we will hear from him soon.

Thanks
Love
Adam Kimberly and Jackson

MRI update

2007-05-27T20:34:00.000-07:00

Hi everyone I know I said I would update right after the MRI, I just have not gotten a chance. Basically we still know nothing. The MRI showed that it is a lymph node, and it is compressing the top lobe of his lung. We did lab tests to see if there was an infection and all the blood work back negative. Our surgeon in Dallas is not worried, our pediatrician said that if the surgeons were not worried then neither was he. I was still worried so I picked up a disc of the MRI and sent it to DR Olutoye in Houston. I talked to him before I sent it and he said he would like to see it, it does not appear to be getting any bigger or smaller. Well I guess that is all for now.
Love
Kimberly Adam and Jackson

I have added some pictures. The one where he is "kissing" the alligator you can see the lump in his neck. We bought him a pool and he loves it so I had to put a picture of that, and then there is one where he is biting Adam's toe, I thought it was hillarious so I had to post that one too.

P.S. Jackson says happy birthday to Grandma!!!!!!!

Hello

2007-05-12T19:32:00.000-07:00

Hi everyone. I got a new computer so hopefully I will post more often. I was not posting because my old computer was so slow. Everything is pretty much status qo here. He is still not eating. He is really acting like a toddler pulling himself up in things cruising around the furniture, and getting into stuff he is not supposed to. I LOVE IT ALL!!!!!!!!!!!!!!!!!!!!! The only real medical news we have is that he has developed a small "mass" on the left (non ECMO) side of his neck. It is right above his clavicle at the base of his neck. It feels like it is filled with liquid. It is very squishy, not hard, it dose not appear to bother him. We took him to the pediatrician and he said it is "Concerning but not emergent". Our concern is that a vessel has gotten weak. He said the only way to know for sure what it is, is an MRI. His office has called Children's hospital Dallas to schedule an appointment, and so far children's has not responded. I will be sure to let everyone know what happens with that. That is really all the news for now.

Love

Kimberly Adam and Jackson

P.S. Keep an ear and eye out for Audrey's ad.

Quick update

2007-04-07T12:20:00.001-07:00

Hi everyone. Jackson is doing really good. He is getting very mobile as much as I wanted this I find myself thinking "Oh my gosh slow down". He is "army crawling" very fast. He loves to follow Adam or I to the bathroom and hit the door, then stick his hands under the door. We went to the doctor for his reflux and we got a prescription for Prevacid. It seems to be working he has not thrown up since Monday. After our doctor appointment we went to take pictures in the bluebonnets. For those of you who do not live in Texas Bluebonnets are our state flower, they are beautiful and every spring they take over the sides of highways. Every spring you can see tons of cars parked along the highway, and their owners traipsing through the bluebonnets then sitting and squashing the bluebonnets all for the sake of a pretty picture. Well this year for the first time in many years I participated in this Texas spring tradition. Jackson was less then thrilled with the idea. I was however fortunate enough to find a patch off the highway. I was actually quite scared of stopping on the side of the highway for pictures. Well enough background. Enjoy the pictures.
Love
Kimberly Adam and Jackson

P.S. Please continue to pray for all CDH babies. I have recently learned, from the internet support group that I belong to, there have been recently been more CDH babies to get their angel wings. Please pray for these families.

Birthday party

2007-03-31T12:34:00.000-07:00

Hi everyone as always sorry for not posting sooner. Things are going pretty good here. The only thing is Jackson has for some reason stopped eating. We were getting him to eat about half a container of stage 2 food, now he won't even take one bite. He has also started to reflux pretty bad after feeds so we are going to call his pediatrician on Monday to see if we need to get him on some reflux meds. The other interesting thing that happened was a little uh-oh. Jackson got this really cool school bus that he can ride on for his birthday. He was riding on it and having lots of fun when he saw another toy he wanted, when he turned sideways to get his toy he fell off his bus directly onto his nose. I was at work when it happened so Adam had to deal with it by himself. His nose is pretty busted up but the pediatrician says it is not broken. It is pretty bruised and bled a lot. I think Adam was more shaken up about it then Jackson was though. It is healing well and just the first of many bumps down the road. Jackson finally got to go see his Daddy play hockey, he had so much fun he was banging on the glass and everything. His St. Patrick's day shirt says "Mommy's good luck charm" That's all for now enjoy the pics.

Love,

Kimberly Adam and Jackson

Jackson turns 1 !!!!

2007-03-05T19:44:00.000-08:00

Hi everyone no news today just some pictures of my amazing little man on his first birthday. He had a great day with his mommy and daddy, and had many birthday calls. There are no words to describe how I have felt today remembering the past year. We have come such a long way and met so many amazing people and friends along the way. So here's to Jackson on his first birthday. Thank you to everyone for this amazing year.

Love

Kimberly Adam and Jackson

p.s. I am including the first picture taken of Jackson, just to see how far he has come.

For Everyone who has been waiting too long for a Jackson update.

2007-02-18T12:59:00.000-08:00

Hi guys, sorry it has been so long since I last posted. Between work and Jackson I seem very busy. There is also the task of getting the computer away from Adam. Anyway enough excuses. Everything is going so good here. If you didn't know Jackson you would almost not be able to tell he had ever been sick, until you take off his clothes and see his scars and G-Button. He is pretty much on track for a baby his age. He is not crawling but he scoots. Jackson's therapist says sometimes it hurts babies with g-buttons to push up onto all fours. I honestly think that is the only thing keeping him from crawling. He brings his knees up and scoots so I know he will do it when he is ready. He still gets anywhere he wants by rolling, he rolls all over the house. We are trying to figure out a way to attach swiffer cloths to him so he can clean the wood floors while he plays. He started sitting up on his own around the 23rd of January. He sits up and grabs all his toys, he loves to put his toys in containers. We have a large plastic mixing bowl that he loves to put toys in and take them out again. He has a dinosaur toy that has balls that you put into and they roll out of the dinosaurs mouth. He will sit there and do that for about an hour at a time. He gets so excited every time. He claps his hands a lot especially after Adam or I clap for him. He loves to wave. He waves when we come in or leave a room. So basically like I said he is a normal one year old. We are still having feeding issues. We got a new kind of g-button (Nutriport) and that fixed all of the throwing up. I don't think he has reflux I think it was just the other g-button (Mic-key), which we believe was causing dumping syndrome. Aside from a stomach bug that he got from me he has been perfectly healthy and has not thrown up since we got the new button. The stomach bug however did earn us a night in the E.R. getting I.V. hydration. The only issue I have with the Nutriport g-button is that he seems to be going through them super fast, but then again the Mic-key buttons didn't seem to last too long either as they seemed to give out after about 5 weeks. They are supposed to last 6 months to a year. His first Nutriport g-button lasted 3 weeks and the second one only lasted 17 days. The doctors have no idea why this is happening. The only thing I can figure out is that he plays on his stomach and rolls around so much they are getting damaged. He is still eating baby food. He will eat about half of a container of stage 2 foods at a time, after that he totally loses interest and screams. If we try to give anything with more texture then that he just spits it out. He likes to lick and suck on things like crackers or biter biscuits but once he gets a piece off in his mouth he spits it out. He is starting to learn to drink from a sippy cup, he is able to suck out some water and swallow without any problems. He does the same thing with the baby fruit puff things. Our therapist is going to have a special eating therapist come with her next time to help us with these issues. Jackson had an MRI just after the last post. His MRI came back totally normal and they could see no evidence of his previous bleeds!!!!!!!!!!!!!!!!
Jackson got to meet another set of Great grandparents. He met Adam's grandparents on his dads side. I was unfortunately at work the night they were in town, I so wish I could have been there. I am posting a picture of Jackson with Adam's family and then one of him with his great grandparents Noveline and Lowell Burgess.
At the end of January an amazing woman named Marcelle had a get together at her house for a lot of CDH mommies. It was so wonderful. It was so great to finally meet all of these people that I feel like I already knew so well. They are all amazing and strong. Catherine (Sofia's mommy) from San Antonio, Lauren (Avery's mommy) from Canada, Jessica (Parker's mommy) from Carolina, and a few other moms from the Dallas area were there. Jackson likes to chew on t-shirts, I guess because of the oral aversion thing, his friend Audrey likes to chew on her blanket. It was truly amazing. I hope this was just the first of many get togethers. I guess that is all for now. I really promise to update more often. We will be having Jackson's first birthday party March 10th and I will definitely post pictures after. Thanks for reading, and once again sorry so long between posts.

Love,
Kimberly, Adam and Jackson

HAPPY NEW YEAR!!

2006-12-31T19:17:00.000-08:00

Hi everyone, sorry it has been so long since I posted. My original idea was once he was stable I was going to post every month around his birthday, that obviously has not been happening. First let me say that everyone is doing wonderful. We had a great holiday, Jackson seemed to really enjoy Christmas. My mom was in town for a couple of weeks and that was wonderful. The rest of my family (my dad, sister and her boyfriend) were in town for a couple of days around Christmas. Jackson even got a personal concert from Catherine's boyfriend Seth Walker it was amazing. My granddad came down from Missouri this Christmas. It was so great because we had not seen him in a long time and it was really important to me that Jackson meet his great-granddad. He stayed at my aunt's house which is about an hour away, that combined with my work I did not get to see him that much. I am so happy I got to see him some though.
Jackson Statistics:
Age: Almost 10 months old (has been home as long as we was in the NICU as of this week)
Weight: 19LBS (17th percentile)
Height: 30in (85 percentile)
Teeth: 6
He is doing very well. He is still a little behind but seems to keep moving forward. He still will not eat. The most we can get him to actually eat is about four bites of baby food at a time, then he just gets mad and screams. The good thing is he really seems to enjoy it, he also tries to take whatever Adam and I are eating so we let him try that. I let him chew on an apple slice (in mesh bag thing) the other day and he seemed to do alright with that but was not too interested. Because he is still not eating we are still feeding him into his g-button every 3 hours. We are slowly upping the amount of his feeds. He is still eating 24cal/oz formula (normal is 20cal/oz). The plan is to up the amount of his feeds slowly then when we get to a certain amount then decrease him to 22cal/ oz then 20cal/oz then space his feeds out. He has started to reflux a lot lately so we are going very very slow.
He is still not sitting up completely on his own yet, he will sit up as long as someone is behind him or he is in his boppy. He can also sit up fine when he is crying but as soon as he realizes he is doing it he falls over. He rolls all over the place. If he sees something he wants across the room he just rolls right to it. He is also starting to do the army crawl. He will only do this for a few inches before he gets tired and rolls. His therapists are all very impressed by him. He loves his voice. He squeals all the time especially when his daddy kisses his neck and cheek. He says BA all the time it is so sweet. He also started waving a couple of days ago, I am so proud of him.
We had a neurology appointment in December and they said he looks great. They even said we did not have to get a follow MRI unless we wanted to. We decided to get an MRI just to check on the 2 previous small bleeds. We will have our MRI on the 2nd, I will try to update as soon as I know results. All other things are about status quo. He is a happy, growing, playful, silly 10 month old.
Thank you all for reading, I will try to update every month from here on out.
Love
Kimberly, Adam and Jackson
HAPPY HOLIDAYS AND HAPPY NEW YEAR

P.S. If anyone at Texas Children's reads this please tell everyone we say hello and miss them, we think about you guys all the time.
Congratulations to Melanie, Carrie and Rosalind

8 Months Old

2006-11-05T15:15:00.000-08:00

Hi everyone. I am so sorry it has been so long since I last posted. It is hard to come up with things to update when there is really not that much to report. Don't get me wrong I love "not much to report". Jackson is doing wonderful. He has been off oxygen a little over a month and seems to be doing great. He came off his Viagra about 2 weeks ago and is doing well with that. His breathing is about the same and when we check his pulse ox (% of oxygen in his blood) it is always above 95%!!!!!!! We saw the pulmonologist a couple of days ago and Jackson is doing so good from a respiratory stand point that he decided we could wait 6 months to see him again. They did his weights and measurements, he weighs 17 lbs and is 30 inches tall. That puts him in the 11% for weight and 95% for height. They also did a head circumference and he is in the 95% for that. So basically he is lollipop baby. He is doing good developmentally he is still a little behind but seems to be making strides everyday. He still can not sit up on his own but is getting very close. He can sit supporting himself with his arms for a couple of seconds. He loves to stand with his weight supported, and can stand for a little bit (seconds) holding onto the coffee table. ECI (early childhood intervention) assessed his developmental status and said he is not really behind at all. He still has some eating issues, basically the only thing he likes is oreos. I have included a picture of what he looks like after he plays with an oreo. He is starting to babble a lot and says ba, bo, ma, and da. His favorite thing to say is "aaaa-pooo". He loved Halloween we sat outside and passed out candy, he got so excited when people came up to us. He was Yoda it was the cutest thing I have ever seen. He got a huge Halloween globe for the front yard, he loved it, so did all of the other trick-or-treaters. After we passed out candy we went over to our friend's house. They have a little girl named Samantha, she was a cat it was adorable we got some pictures of them together. I guess that's really all for now, thanks for reading, and once again sorry so long since the last post.
Love, Adam, Kimberly and Jackson

7 months old

2006-10-10T19:56:00.000-07:00

I can not believe my sweet baby is 7 months old. He is so big. He weighs 15 pounds 13 ounces and is 27.75 inches long. That puts him in the 10th percentile for weight and 75th for height. He is doing really good off his oxygen, he does not even drop his sats at night anymore. His aunt Catherine finally got to see him, she had not seen him since he's been extubated. He seems to be getting stronger everyday, he can almost sit up a little, but not really. He just got his first tooth. You can see top of the first one that's poked through, I can see the one next to it is starting to come up but its still under the gum. That's really all the news for now. Thanks for reading.

Love Kimberly Adam and Jackson

We'll take the good with the bad

2006-09-29T20:52:00.000-07:00

Hi. Ok lets start with the good.

JACKSON IS OFF OXYGEN!!!!!!!!!!!

We went to the pulmonologist's office on the 27th. We told him how well Jackson had been since the last surgery and he wanted to see how he would do off oxygen. We turned it off and waited.....waited......waited.....and kept waiting, his oxygen saturation never dropped below 98%. After about 15-20 minutes with no drop he decided Jackson could go off oxygen. He has been without oxygen since then and is doing wonderfully. He drops his saturation a little at night but not too bad. It is so much fun to kiss all over his sweet little cheeks. His cheeks are very dry and red, but I think they will heal up pretty fast. We got to take him on his first stroller ride. I am not sure what he thought but Adam and I had fun.

Ok here is the bad (turns out to be not all that bad, just a bad day)
Jackson's G-tube was held in with one stitch, the stitch came out on the evening of the 27th, we called the pediatrician's office and they said to wait until morning and call the surgeon, it would be fine through the night. So I called the surgeon on the morning of the 28th. They said because we had not been to their office yet they could not see us until October 12th but the tube should be fine. They did say if it comes out go to the E.R. SO about an hour later it fell out. We got to the E.R. at Children's Dallas at approx. 2pm. The triage nurse put a Foley catheter tube in the hole to keep it open until the doctor could put a g-tube back. When the surgeon saw the Foley he decided that if it was in the right place we would just keep that in instead of pulling it out and putting a new tube into unhealed tissue. So we went to radiology, did a barium study and found out it was in the right place. Another surgeon kept the Foley in place with a stitch and we went home. This all does not sound so bad, the bad part was that to do these things we were in the E.R. 9 hours. Once we finally got home Jackson was starving so we started to feed him only to find out the Foley tube does not fit any of our feeding syringes. I was so mad I was in tears. We had wasted the whole 9 hours. Waited all day, put Jackson through all of this, and not letting him eat only to find out we had accomplished nothing. We found a way to rig it to get through last night's feeds. I did however call the E.R. and let them know that Foley tubes do not work for feeding. The E.R. suggested we call the surgeon's office in the morning and see if they could see us and fix it in their office. So to make an already long story a little shorter. Adam and Jackson spent all day today in the surgeon's office, and Jackson is now the proud owner of a brand new Mic-Key button. One good thing that came from all of this was we really like our surgeon that we saw today, and Jackson got his button which is much easier to deal with then a tube. So see it really was not all that bad. I guess that is a long enough post for now. Thanks for keeping up with us.
A special thanks to our friend Allyson (Houston) who got to listen to me vent about this whole ordeal last night, thanks for listening.

Love,
Adam, Jackson, and Kimberly

Getting better everyday

2006-09-20T22:25:00.000-07:00

Jackson continues to amaze me, he is such a strong little boy. He was really sore for a few days after we got home but is pretty much back to his old self. I put him on his tummy the other day to play and he started kicking his legs and moving his arms and reaching for toys. It looked like he was trying to swim on the floor. I really think he wanted to move toward the toys that were in front of him. I don't think it will be too much longer until he gets a little bit more mobile. I got him to eat about 6 bites of pears the other day. He was sitting in his favorite little chair playing when I sat down beside him and started eating. He looked at me a smacked his lips like he was copying my chewing so I jumped up got him some pears and fed him. After the first bite he opened his mouth for more. I got to eat like 5 more bites before he started screaming. I think he actually liked them. I was so excited I started crying. The weather has been beautifull here lately. It was so nice I decided we should hang out outside. We put a blanket outside and sat in the backyard and watched the puppy dogs play. I think Jackson really enjoyed it. There is not much else going on. We have a urology appointment and a pedi appointment this week. I will try to update after those. Thank you for reading.
Love
Kimberly Adam and Jackson

A week in Pictures

2006-09-17T12:24:00.000-07:00

Hey Everyone, these are just some pics from the last week or so. I had to put one of him in the PICU in just because. Our friend Rosalind gave him a red Elmo balloon while he was in the hospital and he loved it. He still loves the chair Aunt Catherine gave him. Aunt Lori finally got to see him again. The picture where his arms are fuzzy is because he gets so excited when Adam comes in the room he waves his arms and kicks his legs and smiles so big, I actually caught him doing it. I think he is teething but other then that he is doing really good. Thank you everyone for all of the thoughts and prayers.

Love,
Kimberly Adam and Jackson

Home Again

2006-09-14T11:00:00.000-07:00

Hi everyone. Thanks for keeping up with us. We made it home yesterday evening and things are going really well. We were not expecting to be discharged so nothing was done (the hotel was not packed up etc). We got home at about 630pm. Jackson had been fussier then usual and had not had a bowel movement since surgery, so Grandma Sheila went to the store and found baby glycerin suppositories, it worked like a champ. After just a few minutes he had a full diaper and was back to his happy self. The G-tube seems to be working well. He is not gagging anymore which is such a blessing, we really hope this keeps up. He is still a little grumpy, but he just had major abdominal surgery, so we will forgive him. I guess that is it for now. I will post some more pictures soon I promise. A special thanks to all of our Houston friends, we love you and miss you. Next time we will just come visit. Thank you for all you thoughts and prayers.
Love
Kimberly and Adam

Recovering well

2006-09-12T00:10:00.000-07:00

Jackson appeared to look and feel much better on Monday. His swelling has really gone down and he is starting to act more like his usual self, we even got a few smiles from him today. Jackson was moved from the PICU to a private recovery room upstairs. He is back down to a 1/2 liter of oxygen via nasal cannula and is saturating at 100% pretty much all the time. Jackson's feeds were started today through the g-tube and it seems to be going very well. No more NG tube for Jackson, yeah! Jackson's left leg is a bit swollen from where they had an IV at in his femoral vein but a close eye is being kept on it. Hopefully just a few more days before we are back home in Dallas.

Love,
Adam, Kimberly, & Jackson

Back off the vent

2006-09-10T22:13:00.000-07:00

Jackson was extubated at 4:30 Sunday afternoon and is doing well. They have him on 2 liters via nasal cannula just to let him rest as much as possible for right now and will slowly wean it back to 1/2 a liter over the next day or so. Jackson's swelling is gradually getting better. The doctors removed Jackson's epidural shortly before he was extubated and he is now just on morphine to control the pain. Jackson tried to play (pull mommy and daddy's hair, hit at the mylar balloon that Rosalind brought him) a couple of times today when he wasn't hurting too bad. They will probably start his feeds again tomorrow morning and I know this will help him feel better as he must be starving as he has not had any food since 7:30 pm on Thursday night just IV fluids. Please keep those prayers coming they do work wonders.

Love,
Adam, Kimberly, and Jackson

Third times the charm

2006-09-08T22:04:00.000-07:00

Kimberly, Jackson, and I arrived in Houston at @1:00 am on Friday morning. We were seen in the ER very quickly. A short while later they informed us that there was not a single bed available anywhere in the hospital for Jackson so we waited overnight in the ER until his surgery at 4:00 pm Friday afternoon. Jackson went to the operating room at 4:00 pm and Dr. Olutoye came to talk to us after the surgery was over shortly before 9:00 pm and said that the surgery had gone very well. It was originally thought that the patch had come away from the esophagus area but as it turns out the two patches that make up Jackson's diaphragm had separated apart in the middle. They patches were originally left separated from each other thinking this would help provide more growing but somehow his bowels found there way in between and up into his chest again. Dr. Olutoye moved Jackson's stomach and colon back into their correct places and sewed the patches up together. The patches were still attached everywhere else that they had been sewn into the body. Dr. Olutoye said that it appears that Jackson's diaphragm is growing into the gortex, which is very good. Because Jackson still relies solely on tube feedings the decision was made to place a g-tube during the surgery so he will no longer have a feeding tube down his nose. Jackson has an epidural in place for continuous pain relief so he doesn't have to receive to many narcotics. As of right now Jackson is doing very well and the plan is to extubate him on Saturday. Thank you to everyone for your thoughts and prayers.

Love,
Adam, Kimberly, and Jackson

Kimberly & Adam get their Nervous Breakdown

2006-09-07T17:15:00.000-07:00

Jackson has not been able to hold his oxygen saturations above 95 this week and he has also been fussier frequently enough this week that Kimberly & Adam decided that his Dallas pulmonologist should see what was going on. After x-rays this afternoon and phone conferences with Dr. Olutoye the doctors decided that Jackson has re-herniated. Jackson & his Mom & Dad are on their way to back to Houston. Dr. Olutoye will admit Jackson to Texas Childrens as soon as they get there.
I don't know how we will post from Houston to keep you advised, but we will find a computer somewhere to keep you up to date.
Grandma Sheila has the puppies & Grandma Cheryl & Grandad Bill are going to Houston.

Thank you for your continued prayers,
Love,
Grandma Cheryl

Life in the Burgess House

2006-09-01T20:37:00.000-07:00

Hey everyone. Jackson is doing good there is really no news. He is starting to sit up better only with assistance though. He sits in his BUMBO (thanks Jackie) chair a lot and looks so cute, after he has been it for a while he starts to slump forward. He loves to pull our hair. Adam lets him pull his hair so he thinks he should get to pull everyone's hair, only it hurts really bad when he does it to me. The dogs still love him, and he loves them. I think he is going to be really smart. Adam sits him in his bouncy chair and "restrains" his hands in the lap belt part, so then he tries to get to his toys with his feet. I put a picture of him getting his toys with his toes. Work is going good and it is good to be back in a routine. We go to the cardiologist on September 6 and the urologist on September 11, I will update after those appointments. Jackson is off his Lasix, sodium and postassium, which makes our life a little easier. Well I guess that's about it for now.
Love
Kimberly Adam and Jackson

I almost had a nervous break down today.

2006-08-22T23:18:00.000-07:00

Hi everyone. Things are going really good, Jackson continues to thrive at home. We had our first pulmonologist appointment this morning. When we got there we went straight to x-ray for chest x-rays. When we were done with that we met the doctor. I really liked him. He was at Texas Children's until recently, and really seems to know a lot about CDH and pulmonary hypertension. He checked Jackson out and said he was doing really good for as sick as he had been. He asked if we had had any recent x-rays and we told him we had just had one, he was then able to pull up the films on the screen in the room. When he saw the x-ray I could see in his face he was not happy. He asked how this x-ray compared to others, I said it looked more hazy. The he said, "I think he has reherniated again". I almost lost it, hence the title of this entry. He got some numbers from us of people that had taken care of Jackson at Texas Children's. He was able to talk to Dr. Olutoye and they compared today's films with older films and decided to make a long story short, he had not reherniated. So I was able to bypass the nervous breakdown. He decided Jackson could probably come off of his Lasix so we are going to cut his dose in half and see how he does if he does ok we will discontinue it, then we can also discontinue the sodium and potassium too. That's about all for the pulmonologist appointment, I really do like him.
Jackson is still trying to learn to eat. We try to give applesauce everyday and he just screams. The therapist says he is doing good, because he moves it around in his mouth and swallows it, he just screams in between. He is doing good with other developmental things as well. I put him on his tummy on the boppy today and he pushed himself almost all the way off of it with his legs, it was like he was trying to crawl, I was so excited. He has also started blowing raspberries. He sticks out his little tongue and blows, basically he can;t make the noise very often just bubbles. I keep trying to get a picture, but always miss. As soon as I get one I will post it. He has also discovered his toes. He loves his toe, especially the one with the pulse ox monitor on it. My mom calls it his Rudolph toe. He also tries to eat his toes, it is so cute. I guess that's all as far as Jackson goes.
Adam and I are doing really good and adjusting to life at home with baby. Sometimes everything we have just been though hits me and just start bawling. But other then that we are great. I started back to work about a week ago and that is going really well. Adam and Jackson have fun together while I am away. My mom leaves on Saturday, it has been such a blessing to have her here.
Just for laughs
We had only been home a short time when I decided we needed a bigger car (I drive a bug). My mom and I went to look at cars. We had only been at the dealership for a few minutes when my cell phone rang, it was Adam Jackson had pulled out his NG tube. It was still an hour or so until another feed was due so my mom and I kept looking, and even decided to test drive a car. Adam then called and said he could not get the tube in and ask me to come home. His feed was no running a little late, and it was a 30 minute drive back to the house. On the way home my mom and I decided we should probably get some lubricant to make it easier. I was in a big hurry and did not want to stop, but agreed, it probably would be easier. So we stopped at Target. I literally RAN in straight to the pharmacy and found a large tube of KY Jelly "personal lubricant" then ran to the checkout. The checkout was very close to the pharmacy so the young man that checked me out had seen me run in. I ran up to the check out handed over the lube, and got the weirdest look ever!!!! This poor kid, lord only knows what he was thinking. I died laughing the rest of the way home. That guy probably told all his friends some crazy lady was in a huge hurry to buy a lot of lube.
that's all for now
Sorry about the long post.
Love
Kimberly and Adam

Amazing Baby

2006-08-12T22:20:00.000-07:00

Jackson is doing great. He really seems to like being at home. He is already starting to catch up on some of his developmental delays. He holds his head up pretty much all on his own now. When we give him tummy time he lifts his head up looks around and just smiles ( pics included). He likes to be held sitting up in peoples laps, he likes to face out so he can see everything that is going on around him. When we hold him like this he is pushing up with his feet and putting weight on his legs. He also tries to push with his legs when he is on his tummy, he only pushes out though not up yet. When he is on his back if he has something to push against he will push off and scoot backwards. He rolled from his back to his stomach the other day. He has been going from his back to side for a while. We walked into his room one morning and he was sleeping on his tummy, I had put him to bed on his back!!!!!!!! He also likes to scoot in a circle around his crib. I am amazed at him everyday. He is going to take off soon, and I won't be able to catch up. HE is really starting to like applesauce and is really starting to learn what his mouth is for. All of his therapist have been very impressed by him.
We really miss our friends at Texas Children's. A special hello to all of you. Especially Jackie, Allyson, Emily, and Rosalind. By the way I lost of the info Rosalind gave me, if anyone from Texas Children's reads this please help me get all of Rosalind's info, again. Thank you all so much.
Thanks for reading
Love
Kimberly and Adam

P.S. I talked to baby Finn's mom today and he is doing great. He spent 9 days on ECMO. He came off on Sunday, and had his hernia repair on Tuesday. Please continue to pray for this family.
Jackson likes to pull everything off his face. I decided to take a picture of it one morning.

Oscar speech

2006-08-12T21:12:00.000-07:00

I feel like I am trying to write a speech for wining an award when I think of all the people I need to thank for everything they have done for us. Adam, Jackson, and I would not be where we are without a great deal of help. I am just going to make a list.

Dr Daum and Dr Connors in Dallas for making the diagnosis
Sherri for helping me find Texas Children's
Everyone at work for being so understanding about my long absence and covering my shifts.
Jennifer and Heath for EVERYTHING!!!!!!!!!!!!!!!
Butch for keeping up with the yard, fence etc. While we were gone.
Kelly for staying at our empty house.
The amazing scrapbook: Elizabeth, Stacy, Mandi, Donna, Susan, Nakia, and Lori (I still cry when I look at it)
Everyone at Texas Children's
Bella, Dr Olutoye, Dr Cass and anyone else in this group who saw Jackson.
Dr. Weisman, Dr. Adcock, Dr. Johnson, Dr. Adams, Dr. Kahn, Dr. Lawrence, Dr. Horst, Dr. Speer, Dr. Lam, Dr. Soderberg, Holly Boyd NNP, Elizabeth NNP, I know there were probably a million other doctors these are the ones we had the most contact with. I don't even know any of neurologist, pulmonologist, or urologist names. Thank you to all the amazing doctors who took care of Jackson.
Nurses: Jackie :), Allyson :), Kristy:), Melanie:), Della, Beena, Eudora, Elizabeth, Emily, Estrella, Nancy, Cheryl, Lori, Belinda, Kirsten, Stephanie, Inger, Lolita, Morgan, Lisa, Michelle, Carrie, Leah. I know there are tons more we loved all of our nurses and thank you all, please know if you helped take care of Jackson we truly appreciate it.
Rosalind, we miss you. We would have starved in Houston without you.
Perfusionist: Ted, Jim, Jim, Dwight, Terry, David, Pertima, Ed, Bruce, Tiffany
Ann. We know ECMO (and God) saved his life, a special thanks to all of you.
My Parents, we would not have made it home without you guys, and we would still be running around like unorganized chickens with our heads cut off without my mom, and nothing would be unpacked.
Sheila, Adam's mom, there are not words to express how thankful we are, I have no idea what would have happened if we had not had her in our lives. She is an amazing, and generous person. We are forever thankful.
All other family members, we truly needed everyone's support.
All the other CDH families we have met. The support we have gotten from everyone has been amazing, it is so great to get to talk to others who have been through the same thing. Thank you all, I think about you all and pray for everyday.

Lastly, like all Oscar speeches we have to thank God. We know without him none of this would have been possible. I have always believed in miracles and Jackson just proves that they do happen. I know all babies are miracles, I just feel twice blessed. I thank God countless times everyday.

I know there are people I probably left off, and it is not because I am not thankful. So many people helped us in so many ways there is no way to thank them all. Please know I am thankful for each and every person that has helped us along this amazing journey.

Love
Kimberly and Adam

Home Sweet Home

2006-08-05T20:30:00.000-07:00

Hi everyone. Sorry it has been so long since we posted. We made it Monday without any issues. Jackson did great in the car seat. He only fussed a couple of times, and even took a nap. It took us so long to get to everything unloaded, and we still have not totally unpacked yet. It is truly amazing what you can acquire in 5 months living away from home. Jackson is doing so good. He is such a sweet baby. His breathing gets a little better everyday, he does not seem to be breathing as fast as he was, and even seems to be working less hard. He is getting really good at holding his head up and moving it around. He really likes to pull it back and then knock heads with whoever is holding him. He has pulled his feeding tube out twice so far, he hates having it put back in, but we do ok. We have had a pediatrician appointment and we really liked her. Getting Jackson to the doctor was an experience though. My car would not start so we had to take Adam's little 2 seater truck. We got all of us plus the oxygen and pulse ox in there, good thing it was a short trip. It is a full time job to take care of Jackson right now but it is such a blessing. We are really starting to get a system going and a routine, which is very helpful. I think we are probably ready for some visitors. We still would like you to call first, we don't want too many in one day. We also would still like to hold off visits if you or anyone in your house has had cold symptoms in the past 48 hours. If anyone at Texas Children's read this tell everyone we said hi we miss all of our new friends. I will post new pics of Jackson soon, I have some really cute pics, I have not had time to download them onto this computer yet. I guess that is all for now. Thanks for reading.
Love
Kimberly Adam and Jackson.
P.S. Jackson and the dogs love each other they get along great.

GOING HOME!!!!!!!!!!!!!

2006-07-29T09:12:00.000-07:00

Hi guys. We have an official discharge date. We are due to be discharged Monday afternoon. My mom came up and my dad is on his way to help us move. It is amazing what you can acquire in 5 months. We took CPR with grandma yesterday since she will be staying at home with us for a while. We are rooming in tomorrow, and should be discharged Monday. I will not be able to get to a computer for a while after this post. Jackson is doing so amazing. He coos and plays all the time. He is trying to roll over, and can almost hold up his head. He scoots around in his crib and can go almost in a full circle. We have all of our at home supplies for the trip and ready at home. A special thank you to Elizabeth for waiting at our house for delivery. Their are so many people to thank I will write that post when we get home. We truly appreciate everything everyone has done for us, and everyone's concern for us. We know and understand that many of you want to come visit us. We are asking that you please give us a week or so to adjust to being at home with Jackson, getting used to nap and feeding times etc. We also ask that you call before visiting to make sure we will be available, this kid has more doctor appointments then you can imagine. Our last request is that you only visit when you are healthy. Jackson is very fragile, especially his lungs. There is a virus that he especially susceptible to it is called RSV. Almost everyone has had it and will get it again. It presents itself as a common cold in non compromised infants. However in these compromised infants such as chronic lung problems, premies etc it can be fatal. Because of this we ask that you not visit if you or anyone in your house has had cold symptoms, or a fever in the past 48 hours. I know this may seem extreme but believe me it is necessary. RSV season is in the fall and winter, from about September to April. During these months Jackson will get a shot every month to help prevent RSV. Our pulmonologist said we should not take Jackson out of the house except for doctor appointments until RSV season is over. We are so excited to be going home, and know you all are excited for us. Thank you all so much for the many prayers, thoughts, everything else, and lastly for respecting these wishes.
We met an amazing family yesterday. They are just starting their journey with CDH. Their son Finn is 4 days old. We met them yesterday while they were waiting for the surgeons to finish putting him on ECMO. They had heard about Jackson and his case from the surgeons, and nurses. Everyone was so glad to meet. They even got to go into our room and meet Jackson, so they could see the amazing miracles that can happen. These are some of the nicest people I have ever met. This family really needs prayers right now. Their son has left sided CDH and possible a narrow aorta. His name is Finn Patrick please pray for him and his amazing family.

Love,
Kimberly and Adam

Getting close

2006-07-23T22:38:00.000-07:00

Licking his bug

Hey everyone. There is really not much news. Jackson had an "episode" on Saturday morning where he dropped his saturations and his heart rate even dropped a little. His oxygen had come out of his nose and then he started crying and just didn't have the reserve to cry as hard as he did. Once he calmed down everything went back to normal in a short time. We are still planning on coming home soon. We are doing things that we have to do in order to go home. Adam and I do his feedings while we are there and bathe him. Adam learned how to put down and N-G tube (feeding tube) today. I did it on Saturday so we are both checked off on that. We are going to take infant CPR next week. He has to sit in his car seat everyday, we are trying to work up to 4 hours. He did a little over 2 hours today. Jackson still can not take food by mouth, the surgeons say they can not place the feeding tube directly into is stomach so we are going to keep the N-G tube. The doctors want to send us home by ambulance but insurance says they won't pay for it, so the doctor is going to write a special note on Monday. The doctors are going to check his airway on Monday just to make sure his episode on Saturday was not because his airway clamped down. He is getting really interactive. He makes sweet little noises, and loves to play with his toys. He loves to hit things. He also likes to lick everything. Please continue to pray for us, that Jackson continues to do good and can be discharged soon, and all other CDH families.
Love
Adam and Kimberly

P.S. The Disney shirt came from our friend Allyson (night nurse), she went to Disney World a couple of weeks ago and bought that outfit for Jackson.

He was hitting this toy so much, Adam said it looked like he was playing tetherball.

Long time, no post

2006-07-18T21:11:00.000-07:00

Everything is still going good for Jackson. We just haven't posted in a while because there has not been much news. Jackson is still breathing fast but keeping his oxygen saturations up while he is on 1/2 liter of oxygen via nasal cannula. Because of his fast respirations he is still not yet being fed by mouth due to the risk of aspiration. They have started talking about discharge plans, finding doctors and home health for Jackson back in Dallas. Although we don't yet have an exact discharge date they are saying that it should be within two weeks, give or take a few days. We are trying to find the best way for Jackson to go home because of the long trip and his oxygen requirements they may transport him home by ambulance. We will be taking infant CPR in the next week or so in preparation for coming home with Jackson. Jackson is no longer on ativan so the only meds he will go home on are lasix, viagra, and oxygen as well as sodium and potassium being added to his feeds.

Love,
Adam & Kimberly

Prayer requests

2006-07-15T10:51:00.000-07:00

We just learned that Baby Mert passed away. Please pray for this family.

Happy baby boy

2006-07-12T20:12:00.000-07:00

Hi. Jackson is still doing good. His respiratory rate is still pretty fast. We talked to the nurse practitioner today and she said we can not start to try to teach him to eat until his breathing slows down. They do not expect his breathing to slow down for a while. Because so much of his diaphragm is a patch he has to breathe fast. Everyone is very pleased with him and excited that he has been able to stay extubated. All of this means we are looking at a longer time in the hospital then we thought. Other then this he is doing very good. I think he is adjusting to being extubated. His heart rate was slower today then it has been in the past couple of days, and he was the happiest he has been since extubation today. There has been some discussion of moving to level 2 (the less sick NICU), but that is still talk. I guess that's all for now. I am posting a lot of pictures, because he smiled so much today. He loves it when we kiss him, he laughs. He also likes it when I blow raspberries on his tummy. I can not get over how sweet he is.
Love
Kimberly and Adam

P.S. Mert had surgery and is recovering well, please keep this family in your prayers.

Baby Mert

2006-07-11T10:24:00.000-07:00

Hi. Baby Mert is here, thats all I know right now. There is a pic of him on their page, he is so handsome. Please pray for this family.
Thanks
Love
Adam and Kimberly

Still Extubated

2006-07-10T20:57:00.000-07:00

Hey everyone. Jackson is still doing good. He keeps his oxygen saturations over 95% all the time. His work of breathing is so much better today. He is really doing good, everyone is so pleased. They are not going to start trying to feed by mouth until they know that being extubated is not going to be too hard on his heart. A BNP (heart function number) was done today and it was 65. This is really good, they want it under 100. So it appears that right now being extubated is not putting too much strain on his heart. His mobile broke recently and Adam and my dad were able to fix, it worked for like 2 days then broke again. We were so upset because he loves it so much. Any way we bought him a new one today and we went in to see him the old one was working again. He got to wear an outfit that my Aunt Pattie made him today. It is such a great outfit because it is totally velcro so it does not have to go over his head. It is the perfect NICU outfit. He had to get a haircut today. He moves his head from side to side to fall asleep, and this caused him to get knots in the back of his hair, so I am including pictures of his first haircut. Well I guess that's all for today. Thanks for reading. Baby Mert should be here today, please keep his family in your prayers.
Love
Adam and Kimberly

I think he has Gerber baby lips. :)

Just Pics

2006-07-09T18:40:00.000-07:00

Hi everyone, I am officailly picture happy. He is still extubated and doing good. No news really today. He won't keep his fingers out of his mouth. He loves being held up on our shoulders.
Thanks for reading.
Love
Kimberly and Adam

EXTUBATION!!!!!!!!!!!

2006-07-09T00:05:00.000-07:00

Hi everyone, I am guessing you know the next sentence from the title. Jackson is no longer intubated. The ET-CPAP was hard work for him but he was doing really well. It was making him have a lot of thick secretions and he was requiring a lot of suctioning, he was also drooling everywhere. Because of the drool and just normal wear his ET tube needed retaped. While the nurse and RT where trying to retape him, he started getting all foamy and coughing, and coughed out his tube. While this was not a scheduled extubation, they decided to go ahead and let him stay extubated. So far he is doing really good. He is breathing a little bit fast but that is to be expected. He is keeping his O2 saturations in the high 90's and is on 3/4 of a liter of oxygen via nasal cannula. His lips are so beautiful. He is making little sounds, his vocal cords are swollen so he is pretty hoarse. He will be full volume in no time I'm sure. Well I guess that's about all for now. He has to be watched very closely the first couple of days to make sure he can do this, so I will post frequently. Thank you all for all your thoughts and prayers.
Love
Adam and Kimberly

He was holding his own oxygen.

ET-CPAP

2006-07-08T11:59:00.000-07:00

Jackson was switched over to ET-CPAP (endotracheal-continuous positive airway pressure) on Friday morning with a pressure of 7. At times Jackson struggled with it but for the most part he is handling it well as he kept his oxygen saturations in the mid to high 90's unless he needed suctioned. Today the doctors reduced the CPAP pressure to 6 and he is doing great still. The plan is to reduce the pressure to 5 on Sunday and then to extubate on Monday morning. Even though Jackson's primary nurse, Jackie, won't be there on Monday we should have another one of our favorite nurses as Melanie signed up on Friday afternoon to take Jackson on Monday and Tuesday. Please pray for the extubation to go well. Baby Mert is scheduled to be born on Tuesday. Also we have a special prayer request for baby Gavin here in the Texas Children's NICU. Gavin recently had surgery and is not doing well.

Love,
Adam & Kimberly

Progress continues

2006-07-06T00:29:00.000-07:00

He was so excited to see Grandma and Grandpa.

Jackson continues to do very well. He started his 24 hour pressure support yesterday (July 4th)at 8am. The plan is to wean his ventilator just a little bit more before extubation. They want to wean his amount of pressure from 13 to 10, in the morning. The the next morning they want to wean his PEEP from 7 to 5, this might take a couple of weans hopefully done in the same day. All of these weans are obviously only going to be done if Jackson keeps tolerating them. So Friday we should be on the settings we want. Once he has tolerated these settings for 2-3 days they will try to extubate again. So we are thinking Monday or Tuesday for extubation. Although we are very excited about this we really wanted him to be extubated on a day Jackie, his primary nurse, was there. Jackson is the happiest baby I have ever seen. He smiles so big all the time, and laughs a ton. Even if you wake him up he just smiles at you. His central line should come out in the morning, and his phenobarbital (seizure med) will probably be discontinued. His ativan was weaned today. He amazes me everyday. He is such a strong happy little boy. Thanks for reading.
Love
Adam and Kimberly

P.S. Audrey is HOME!!!!!!!!!!!!!!!!

We were allowed to let him taste lollipops, he loves them. I think he likes watermelon better then cherry.

Back in the saddle again

2006-07-03T10:44:00.000-07:00

Hey everyone. Jackson is back to making huge amounts of progress. He appears to be recovering from surgery very well. His swelling is almost totally gone. Thursday they had to increase his ventilator support a little. He was retaining so much fluid he got a little bit of fluid build up around his left lung, this caused his blood gases to not be very good, so they increased his ventilator support. After a couple of days on the increased support they were able to start weaning down again, and we are now back to our low settings. They have also started pressure support trials again. They did 6 hours yesterday and 12 hours today. The plan is to go to full time pressure support trials tomorrow. After he is on that for a couple of days they will extubate, if he continues to do well. So possibly he will be extubated on Thursday or Friday. He is also back up to his normal amount for feedings. He is taking 76ml every 3 hours through his feeding tube. He is not throwing up, so I guess the fundo is working. They are talking about taking the central line out Wednesday. Everyone is seems optimistic that the extubation will work this time. I feel in my heart that he only failed because his hernia recurred, and he will do great this time. Please keep our family, as well as all the other CDH families in your thoughts and prayers.
Love
Adam and Kimberly

PS- Jackson wants to say happy birthday to his great granddaddy who turned 87 on July 3rd.
Love Jackson

Post-Op update

2006-06-29T09:45:00.000-07:00

Hello. Jackson is doing O.K. postoperatively. The first days have been a little rough. There have been issues keeping Jackson's pain level under control. He started out on morphine every three hours. He still appeared to be in pain so they increased the dose a couple of times. When that was still not working they started him on a morphine drip. He seemed slightly better. I have just found out this morning that they have increased the rate of that drip. His blood pressures have also been very high. This is thought to be because of the pain and lack of viagra. The viagra was being given to him through his feeding tube, because he has not been able to have anything in his stomach he went about 2 days without his viagra. Although he is not getting food yet they are giving him his viagra. When I talked to his nurse this morning she said his blood pressure was back to his normal. She also said he looks like he is more comfortable. He is also a little bit swollen but this is expected after surgery. Jackson's respiratory status is great. His blood gases have all been wonderful and he is keeping his oxygen saturation in the mid to upper 90's. They are still saying we can try to extubate again soon. Well I guess that is all for now. Thank you for reading, and all of the prayers.
Love
Adam and Kimberly

Surgery is over

2006-06-27T16:53:00.000-07:00

They called us at about 9:30 this morning to tell us that Jackson was going up right then for surgery. He was originally scheduled as a squeeze in between the 4th and 5th case of the day so everyone was expecting it to be around 4:00 that afternoon but a spot became available earlier so they decided to go then. Dr. Olutoye performed the hernia repair and also went ahead and gave Jackson a fundoplication. Jackson did very well in surgery with no problems arising. The anesthesiologist wanted to extubate Jackson right after surgery because he was doing so good. Jackson is back in his room and doing very well. He is still on very low vent settings (22 PIP/6 PEEP, and 30% oxygen) and saturating in the mid to high 90's. Jackson should be able to get back to his pressure support trials shortly and hopefully get extubated not to long after that. We are very excited to have our favorite nurses (Allyson, Emily, Melanie, and his primary nurse Jackie) taking care of him over the next several days. Thank you everyone for your thoughts and prayers.

PS- Baby Mert is scheduled to be induced on Monday, July 3. Please pray for him and his family.

Surgery scheduled again

2006-06-26T20:44:00.000-07:00

Aunt Catherine bought him "Little nut brown hare" from the book Guess How Much I Love You. Here is a picture of Adam reading the book to him.

Hey everyone. Jackson's CT scan today finally proved without a doubt that the gortex patch has come unsewn, causing a reherniation. We talked to Dr. Olutoye today for quite a long time. As of that conversation he was unsure of how he was going to go about fixing the hole. He said he would probably make a small incision and place a camera in that incision and look and see how big the hole is. He said if it looks small he might try to fix it laproscopically (less invasive), if it looks like a large hole he will have to reopen his abdomen. The surgery is scheduled for tomorrow (Tuesday June 27th). It is the fourth case, this means it will probably be late afternoon. The good news is Jackson is doing great. He smiled all day today it was so sweet. He even smiled at Dr. Olutoye. I will update tomorrow night with a surgery report. Please pray for us, please pray that the surgery goes well and no complications arise and that he can have a speedy and noneventfull recovery. Thank you so much for reading and all of your thoughts and prayers.
Love
Kimberly and Adam

He was all smiles today, I could not resist.

Extubated....for just a while

2006-06-24T22:46:00.000-07:00

Friday morning, after 48+ hours of continuous pressure support trial, the doctors decided to extubate Jackson. At around 10:30 am the doctors removed Jackson from the vent. Jackson's work of breathing was not good as soon as he came off the vent. He was breathing around 80+ breaths a minute and retracting with each breath he took. His heart rate was up above 200 bpm and even with 2 liters of oxygen via nasal cannula he was really having to work to keep his oxygen saturations in the low 90's. He was given some steroids in the hope that perhaps his airway was swollen from being extubated for so long and that the steroids would decrease the swelling. It seemed to help some but even when he calmed down enough to go to sleep his work of breathing was still not good and his heart rate remained high around 190 bpm. At about 1:00 that afternoon Jackson couldn't keep his oxygen sats up so the decision was made to reintubate him. Jackson immediately felt much better back on his vent. X-rays were taken to insure that the placement of his ET tube was correct. When the results came back the doctors discovered that the gortex patch used to close the hole in Jackson's diaphragm had slipped and that his stomach was now back up in the left side of his chest. This is quite possibly the reason why Jackson failed to come off the vent. Jackson will have to have surgery to fix the patch but we don't know as of right now when he will have it. It's not an emergency as Jackson is doing just fine on his vent at 23% oxygen, a PIP of 23, and PEEP of 5 and saturating in the mid to high 90's still. Jackson is scheduled to have an CT scan on Monday to give the doctors a better idea of where the patch has slipped or come untied from. Hopefully after Jackson's patch is repaired and once he is recovered from the surgery they can get right back to pressure support trials and give him another shot at extubation. We were able to get one picture of Jackson without his tube, it's the one where he is laying on his tummy. You can see in his eyes just how uncomfortable he was. Please pray for Jackson's surgery to go well along with a speedy recovery. We'll update when the surgery is scheduled when we find out.

Moving Fast

2006-06-21T16:37:00.000-07:00

Hey everyone. Jackson did so good on his 12 hour pressure support trial on Monday that they decided to increase the length of time by four hours on Tuesday. Jackson did 16 hours yesterday and did well. We were expecting 20 hours today so we were very surprised today when we got to the hospital and learned that the doctors were so impressed with his progress that they decided to try a 24 hour pressure support trial. This trial will be done at 9am tomorrow. At this time they will do a blood gas and decide if he can continue on pressure support. He is handling it great as of right now. If he can do it for a couple of days they will start to wean the pressure. If they are able to wean the pressure enough, they may either extubate him or place him on E.T. CPAP. The difference in pressure support and CPAP is that when Jackson initiates a breath on pressure support the ventilator pushes air into his lungs (i.e. pressure). CPAP on the other hand is just constant pressure to keep his lungs open. Doctor Speer talked to us today and said he is hopeful. Well I guess that is all for now. Jackson is making great strides and we are very excited. Please continue to pray for us, that Jackson can get off the ventilator and avoid a tracheostomy. Thanks for reading.

Love
Kimberly and Adam

Happy Father's Day

2006-06-19T20:59:00.000-07:00

Hey this isn't really an update. He finished his 12 hours wonderfully. They did a blood gas at the end and it was AMAZING!!!!! I am really doing an update to add pictures of Jackson and his daddy on his first father's day.

Love
Kimberly and Adam

Still on the right track

2006-06-19T17:05:00.000-07:00

Hi everyone. Jackson continues to do amazing. He is still doing the pressure support trials, he is all the way up to 12 hours today. So far today he is doing great, he has 1 hour left. Recently his heart rate has been a little higher then normal for him. They did a BNP (heart function number) today and it was 57. This is great this means that although his heart has been beating faster is not having to work harder. This basically means that the pressure support trials are not putting too much strain on his heart. Hopefully we will continue on this route and be extubated soon. All of our nurses seem optimistic. Adam and I are also getting optimistic. He is still holding down his feeds and still being fed over an hour. Well I guess that's all for now, thanks for reading.
Love
Adam and Kimberly
P.S. Although it stormed where we are, there was no flooding.

Super Smiley Baby Boy

2006-06-17T16:37:00.000-07:00

Hi everyone. Jackson is doing AMAZING!!!!!!!!!!!!! They have gone down on his oxygen again, he is on 28%. He continues to do pressure support trials. He is up to 8 hours. He did 8 hours today with no problems. He keeps his oxygen saturation around 97-100%. He is doing amazing on his pressure support trials, the goal is to add 2 hours a day to presure support until he gets to 24 hours. After about 2-3 days on total pressure support they start to talk about extubation. He is also still holding down all feeds with little residuals. He is still getting 70mls over an hour, so the goal with this is to shorten the feed time. He is the happiest baby I have ever seen. Here are some pictures of him smiling. Please continue to pray for us and all CDH families. Baby Mert should be here soon.
Love
Adam and Kimberly

Continued progress!

2006-06-15T16:55:00.000-07:00

In the past two days they have weaned Jackson's oxygen from 42% all the way down to 30%!!!! His PIP has been weaned from 22 to 20 and his PEEP is down to five! Jackson started pressure support trials again on Wednesday and went for a little over two hours during which he kept his oxygen saturations at 99-100. Today Jackson had a four hour pressure support trial and did great. His morning blood gases continue to be outstanding. On Wednesday they also began bolus feedings into his stomach, giving him 70 ml over an hour every three hours and so far he is doing very good with this having not thrown up and also having very little residuals, just 1-2 ml leftover. Jackson is happy and smiling all the time and making tremendous progress towards getting off his vent.

GO JACKSON GO!

2006-06-13T18:10:00.000-07:00

Jackson's blood gas was so good this morning that instead of going down from 45% oxygen to 43% they went down to 42%! They weaned his PEEP from 7 down to 6! They even weaned his pressure support level of 15 down to 13. They weaned his ativan some more as well. They got another blood gas at 3:30 this afternoon to see how he was doing with the changes and it was still so good that they weaned the PIP (inspired pressure) from 23 down to 22. All this and Jackson still pretty much always saturates at 100%! They are saying that Jackson will probably begin pressure support trials in the next few days as well. Jackson is totally line free now as he no longer has any PICC lines or IV's. Jackson smiles all the time and is very interactive with others, which is a big deal for a baby that has been as sick as him. Enjoy the pics.
Jackson showing some attitude as he is sitting in a physical therapy chair.
GO MAVS! His friend, Robin, said that Jackson has to represent big D in H-town!

Amazing strides forward

2006-06-13T11:10:00.000-07:00

Hi guys, this is going to be super quick, I will post more with pics tonight. Jackson is doing GREAT!!!!!!!!!!!!!!!! They are weaning is oxygen by 2 everyday. He is now on 43%!!!!!!!!!!!!!!!!!! They have also weaned his PIP (inspired pressure) from 25-23, we were on 20 before the pulmonary hypertension. He is handling all of these changes wonderfully and always sats about 100%. His BNP (heart function number) is all the way down to 50. He is happy and playfull all the time, he smiles constantly. They are checking another blood gas today, so there will probably be more changes to talk about when we get home. He is still being fed into his stomach. He is tolerating his feeds wonderfully and has only "refluxed" twice. This is amazing, no one can believe how well his tummy is doing. The feeds are still continuous, his reflux may show up when we go to bolus feeds. But right now everything is wonderfull. Thanks for reading and praying.
Love
Kimberly and Adam

THANK YOU

2006-06-08T21:10:00.000-07:00

We would like to thank Jana Lewallen (mom to Drew 3/8/06-4/16/06 and Elizabeth). She made the amazing slide show of Jackson. We love it so much and are so happy that she was able to do that for us. She even posted it on the blog because we could not figure out how. Once again, thank you Jana.

Well We actually figured out last night that Jackson has not really been a bad boy. He actually coughed so hard is ET tube came out, and he did again last night. He has some really thick secretions and he just coughed so hard he dislodged his tube, poor baby. We got more good news today. Remember the BNP (heart function number)? It was 71 this morning, the normal range for this is 0-100. When he was his sickest with the pulmonary hypertension his was as high as 3,000. We also found out that they did a blood gas this morning and the results were "too good", HE GOT HIS OXYGEN WEANED!!!!!!!!!!!!!!!!!!!! Ok we only went from 55% to 53% but that is definitely the right direction. He kept his sats at about 100% all day. He also is not throwing up yet, so his tummy is doing great. Hopefully we will stay on this track now and have slight improvements everyday. As always please continue to pray for us, and all the CDH babies.
Love
Kimberly and Adam

P.S. Sofia is doing great, tolerating feeds and even getting to nurse, she should be on her way home soon.
Audrey is also doing wonderful and making amazing strides everyday.

A slideshow for Jackson

2006-06-07T17:46:00.000-07:00

Bad Boy

2006-06-06T21:34:00.000-07:00

This the outfit that Alyson gave him, don't you love
his eyes!!!!!!!!!!!!

Hello all. As you might have gathered from the title Jackson was a bad boy today. He learned a new trick. He pulled out his ET tube. In the long run it is no big deal. They simply reintubated him. They said it was a straight forward intubation and was done with one attempt. He also got a new feeding tube today. As you may remember from previous posts he was being fed into his small intestine to avoid reflux, which is common with CDH babies. They placed a new tube today from his nose into his stomach (NG tube). As of this evening he had not spit up at all!!!!!!!!!!!! This is great news, so far so good. They also check residual levels of the feed every four hours to make sure his body is processing what they are giving him. They take an empty syringe and draw out of the feeding tube to see what is left in his stomach. They want this number to be less then half the total amount of food he got over that four hour period. His residual levels this evening were very low!!!!!!!!!!!!!!! They also repeated the BNP ( heart function number) this number appears to be stable in the low 100s. Another echocardiogram was done yesterday and we got the results back today. All of the numbers that they look at with this test were in the normal range!!!!!!!!!! This is the first time this has happened since he develpoed pulmonary hypertension. They said it looks like the workload of his heart is also stabilizing. Basically all that means the Pulmonary hypertension is improving and his heart is not having to work as hard!!!!!!!!!!!!!!!!!! The goal is to now get to a point where they think the heart and lungs have stabilized, then start weaning his oxygen. They are going to do echocardiograms every other week and BNPs every week. So hopefully in a couple of weeks we will start to wean. He is also having physical therapy (PT) and occupational therapy (OT). Physical therapist are working with him on trunk and head control while the occupational therapist are working on sucking and avoiding oral aversion. The physical therapist are very impressed with his progress so far. I am going to post a picture of him sitting up assisted by a PT. The PTs are also using Kinesiotape on him to help his muscles. I am also going to post a picture of him with a giraffe, one of our favorite nurses, Emily, gave him. And another photo of him in a blue outfit that another one of our favorite nurses, Alyson gave him. Well I guess that's all for now.
Love
Adam and Kimberly

This is the giraffe Emily gave him.

He is swatting at the rings he loves this game. :)

Another infection :(

2006-06-03T23:05:00.000-07:00

Thursday morning when we walked in to see Jackson he was being put back into bed and was not happy. Physical therapy had put him in a chair to help him work on sitting upright and he did not seem to like this at all, so they put him in his vibrating chair but he was still unhappy. Once Jackson was back in bed he began to bring his stats back up, but not up to his usual levels and his heart rate was very high for him as it was staying around 190-205 bpm for several hours. His temperature around this time was 98.8. A few hours later Jackson's temp was up to 101.8 so the doctors started antibiotics (vancomycin and gentamicin) and ordered a sepsis workup, which included blood cultures, a spinal tap, and urine analysis. His white blood cell count was 40,000 and his CRP was 3.3, which should be less than 1. The spinal tap was very clear, which is good. About 16 hours after cultures were taken bacteria began to grow in the blood culture. By Saturday morning they had identified the bacteria as a form of bacillus. With this information, the infectious disease doctors advised for the removal of Jackson's PICC line as bacillus likes to cling to stuff. Jackson had just finished his last dose of Amphotericin B the night before so the PICC line wasn't really needed as much anyways. The doctors will continue to treat the infection with vancomycin via IV. As of Saturday evening nothing else had grown bacteria, just the original blood culture. Jackson has been coughing a lot and with his increased secretions they decided to switch him to an in-line suction catheter. Jackson is starting to look and act like he feels a little better but he still feels pretty bad. Through all of this Jackson always kept his oxygen saturations up pretty good. The lowest he went was into the low 90's but he is back up to 98-100 now. His heart rate is still very fast for him as it is staying in the 130-150 range when asleep and in the 160-180 range when awake but it is slowly coming back to within normal ranges. The doctors started Jackson on Sildenafil (Viagra) Thursday evening in hopes that it would help open up the pulmonary blood vessels therefore decreasing the pulmonary hypertension even more and aid in weaning his oxygen down from 55%. With the infection though we can't really tell if has begun to help yet or not. Jackson is no longer on any morphine as they discontinued it on Friday. Once Jackson is completely done with the antibiotics they can pull the IV lines and he will be line free. That's it for now, hopefully Jackson gets over this infection very quickly.

Love,
Adam & Kimberly

We Moved

2006-05-31T23:36:00.000-07:00

Hi everyone, there is really no news to speak of. We moved to D pod on Tuesday and met some of our new caretakers. We met the nurse practitioners which I am really excited about, we are also adding a cardiologist and a pulmonologist to the team we have not met them yet though. Dr Speer will be our attending this month, and Dr. Lawrence is the fellow. This is wonderful we love Dr Lawrence and he has even said that Jackson has been one of his favorite patients, ever. Some of the doctors think that Jackson needs a trach, but are unsure when to do it because feeding will be a bigger issue if he gets it, this is because he would need a tube directly into his stomach (G-tube). Babies with a trach can not be fed through their mouths and the tube he has now goes from his nose into his small intestine. This is not good for long term, and if he gets a trach he will probably have it for about a year. This tube would have to go directly into his stomach, but they are concerned about reflux so he would also need a surgery to fix that (fundoplication). Because of all of this they are a little more hesitant to do a trach, which makes us happy. I think the plan is to see what we can accomplish in the next 4 weeks. We are basically waiting for his lungs to grow and get strong. So we are not expecting any significant vent changes for about 4 weeks. We will however continue to wean his medications. He is almost totally off of morphine. Once the morphine his gone we will work on his ativan. Ok so for not much news that was a really long post.
We received a comment from a couple in Turkey, they are expecting a little boy with a left CDH in July. Their names are Aytekin and Emel and their baby will be Mert. Please add this family to your prayer list.
Sofia and Audrey are both doing great. This just reinforces the wimpy white boy theory. Go Girls.
Will post pics next time.

Love
Adam and Kimberly

Update

2006-05-25T22:18:00.000-07:00

Sorry for not updating in a while. On Thursday May 18th the doctors weaned Jackson down to 53% oxygen, however the next day Jackson appeared to be having some problems keeping his saturations at sufficient levels, as he was only saturating 88-92 on 53% oxygen, so the doctors increased his oxygen all the way up to 100% and slowly weaned it back down to 55% later that same day. X-rays showed that Jackson had some fluid build up in the lower lobe of his right lung. The treatment for this is CPT, which they did for 2 days. Jackson has been on 55% oxygen since but is always satting 98-100. Jackson's follow up echocardiogram on Monday 5/22 showed continued improvement, while his BNP level was all the way down to 180, which is very good. Jackson has another echocardiogram scheduled for Friday 5/26 and if it has improved yet again then the doctors are planning to wean his oxygen from 55% to 54%. That's not a typo, just 1%. The plan right now is for Jackson to be moved on either Monday or Tuesday of next week over to D pod, which is the area for chronic patients. Over the next month, if the doctors aren't able to wean Jackson down sufficiently from his current vent settings then he will be given a tracheostomy. D pod is for ventilator dependent babies and specializes in weaning them off the vent. Kimberly and I still think Jackson can be weaned off the vent without having to get a tracheostomy. Jackson only has 7 days left of his yeast medication (Amphotericin B), yeah!!!!. He has been on the medication for 5 weeks now and infectious disease doctors recommended that 6 weeks would be enough. Follow up renal sonograms have shown basically no changes, which is good, and the urology doctors continue to follow Jackson's progress. We are posting pictures of Jackson in outfits from both grandmas. The blue stripe outfit is from grandma Cheryl and the gray baseball outfit is from grandma she-she. We also included a picture of him playing with his rattle.

Love,
Adam and Kimberly

Steps in the right direction

2006-05-17T16:41:00.000-07:00

Hello everyone. Jackson is making strides in the right direction. The doctor did another BNP (blood work that tells how hard the heart is working) it is now down to 350!!! They also did another echocardiogram. They did not take the same measurements they took last time. The last echo rated his pulmonary hypertension as high end of mild, the most recent one was rated as trivial. All the tests are saying Jackson is getting over the pulmonary hypertenstion. They are now trying to wean is oxygen back down. The highest it got was 58%. Yesterday they weaned him to 57 then today down to 55%. Although these are small steps they are in the right direction and we have to go slow to prevent him from developing pulmonary hypertension again. One of our favorite nurses, Alyson, bought him some outfits and they are letting him wear normal clothes now. She also bought him a beautiful blanket, he loves them. Adam bought him a mirror that makes sounds and has lights, he loves it so much, he likes to look at himself. The goal now is no more set backs, wean the oxygen, and start pressure support trials again. This will probably take a couple of weeks, at least. I have recently gotten to hold him with his tummy on my chest, it is the best! Well I guess that's about all for now. Thanks for reading and please continue to pray for us and all the other CDH babies and families.

Sofia is doing great!!! She is extubated and moved down to a special care nursery.
Audrey is holding her own and fighting hard.

Happy Mother's Day!

2006-05-14T11:18:00.000-07:00

Jackson has been doing very well on the increased support from his vent, which has allowed his heart and lungs to be given a rest. Jackson has been on 55% oxygen since Wednesday afternoon until Dr. Adcock decided to bump him up just a bit more on oxygen to 58% on Saturday. On Wednesday when the doctors drew Jackson's blood to check his BNP level (something that gives an indication about how hard the heart is having to pump; the lower the better) it was 2995, which is very high. On Friday when the doctors checked his BNP level it was much lower, having come all the way down to 754. The doctors want Jackson to keep his oxygen saturation levels above 95% for the time being and Jackson has been doing just that. The only time he has seemed to drop below 95% is when he is being messed with or squirming too much for the pulse ox to pick up a proper reading. Jackson's heart rate has been much lower over the past several days as well, as it has been staying in the 90's to 110's while sleeping and in the 120's to 140's while awake. Just a few days ago his heart rate would be in the 140's when asleep and in the 160's to 180's while awake, so this has improved a lot as his heart is pumping more effectively. Jackson is scheduled for another echocardiogram tomorrow so they can see how much pressure his heart is having to exert. Last Wednesday the number they got from the echo was 4.7, which is high, so hopefully this number will be much improved on Monday. Physical therapists continue to work with Jackson on his head mobility and it seems to be helping. Jackson has been moving his head to the right a little bit on his own, which is big news since he doesn't like to go to the right because he had to have his head to the far left for the first 4 weeks of his life while on ECMO. He has even been tolerating laying on the right side more than he has in the past. Thank-you for your continued prayers for Jackson.

Love,
Adam & Kimberly

New et tube

2006-05-10T17:30:00.000-07:00

Tuesday morning Jackson kept desaturating and wasn't able to keep his oxygen stats up to acceptable levels with his 3.5 et tube despite being on 75% oxygen, so the doctors finally decided to reintubate Jackson with a larger tube, this time with a 4.0 et tube. The reintubation went smoothly the doctors said. While the bigger et tube has helped some, he still is on higher oxygen levels and pressure settings than he was just a few days before on a smaller tube. Today, Jackson has been keeping his oxygen levels around 92-98 on 50-55% oxygen from the vent. The doctors had an echocardiogram (heart sonogram) done today on Jackson because they think his pulmonary hypertension has increased and the preliminary readings seem to indicate just as they thought, so they are planning on keeping his vent oxygen settings up around 50- 55% and letting him really rest for a few days or more in the hopes that this will help reverse the increase in his pulmonary hypertension. Jackson will not have any pressure support trials in the mean time until he shows that his pulmonary hypertension has decreased. Although this isn't great news at least now we know why he has been requiring more and more support from the vent over the past several days and can begin to treat it accordingly. On Tuesday afternoon Kimberly and I helped bathe Jackson as the nurse said he was very stinky.

Hope you enjoy the pictures. Please continue to pray for Jackson as well as the other cdh babies and their families.

Love,
Adam & Kimberly

More rollercoaster riding

2006-05-08T15:09:00.000-07:00

Hi everyone. We told Jackson we were done with the rollercoaster ride and only wanted straight and steady, he had other ideas. He has begun to require more support from his ventilator. On May 5th his oxygen saturation dropped into the 80's and he was not able to bring it back up, so they increased the amount of oxygen the vent was giving him from 32 to 35%. He did the same thing the next night and they had to go from 35 up to 40%. They stopped pressure support trials at this time, we never got above four hours though. The next night May 7th he had another seizure. It was only one, it lasted less then a minute and his oxygen saturation came back up quickly. Because of this they had to do a work up to see if he has an infection. So far the preliminary labs look negative for infection. We have to wait 48 hours for definite results, so he is on antibiotics in the meantime. Then this morning his oxygen saturation was staying in the upper 80's so they increased his ventilator settings again. They increased the amount of pressure he gets with each breath (PIP) and the amount of pressure left in his lungs at the end of each breath (PEEP) and kept the oxygen % the same. There is talk of getting him a bigger vent tube. Right now there is a large "air leak". Meaning air is escaping around the ventilator tube so the amount of pressure the ventilator is set to give him is not actually the amount he is getting. This has pros and cons so right now it is just being discussed. Well I guess that's all for now. Please continue to pray for us and all the other CDH families out there.

Love Adam and Kimberly

P.S. Baby Sofia is doing AMAZING!! Baby Audrey is holding her own and fighting like a CHAMP!

Pictures of our beautiful baby boy.

2006-05-04T18:05:00.000-07:00

No news really today. Jackson has done four hour trials the past two days and has done very well. I think they are going to try a six hour trial tomorrow! We are getting there it is just baby steps at this point. They have been weaning his morphine and is he is now on a very minimal dose. They are also increasing his feeds and he now takes 24mls per hour per his pump. The food is still going directly into his small intestine so we don't know how bad his reflux will be. Well I guess that's it for now. Jennifer in Dallas is being induced with baby Audrey today so please pray for this family, starting their journey.
Love
Adam and Kimberly

Continued ventilator trials

2006-05-02T18:51:00.000-07:00

Hi everyone. Jackson got up to four hours with his vent trials. After a four hour trial on Saturday that went great, he got really mad. About ten minutes after the ventilator was turned back to it's normal settings back he flipped out. He turned bright red made his "cry face" and dropped his sats. His sats stayed in the low 80's for about 3 hours, then he was in the upper 80's to low 90's for a while. He dropped again a few hours later and did the same thing down for a couple of hours then back up but still lower then we want. Sunday morning he went down again but just for a little bit, since Sunday afternoon he has pretty much been in the 90's. He did really good Sunday night through Monday. They did not do a vent trial on Monday because he had to get a Pic line placed and was sedated. They started him back on vent trials today. He did two hours today and did great!!!!!!!!!! Hopefully we will continue on the vent trials and we will be off this ventilator soon. I guess that's all for us today.

special prayer request for baby Gabriel. Gabriel is another CDH baby here at Texas Children's he was born in January. They have been unable to correct his pulmonary hypertension and has been waiting on a lung transplant. He is getting his lung transplant tonight at 8:30pm. Please keep this family, as well as the donor's family in your prayers.

Love
Kimberly and Adam

Bouncy Chair

2006-04-28T18:25:00.000-07:00

Hey Jackson got to sit in a vibrating bouncy chair today. He loved it! He continues to do very well. Here are some pics of Jackson in the bouncy chair.
Love
Kimberly and Adam

MRI update

2006-04-27T17:41:00.000-07:00

Hey everyone. Jackson had an MRI of his head today. It appears on the MRI that there are two spots where he may have had a previous bleed. One is not inside his brain but in the layer right above it. We knew about this one from a previous head sonogram. The other spot is very small and is in the left frontal motor area. Because this is in the motor area it should not affect his cognitive abilities. The doctors say that this may cause him to need additional physical therapy though. The good news is it does not appear to be causing any problems right now. He is moving the right side of his body just as well as his left. Basically we just know it is there now, most likely there will be no long term effects from this. That's all of the news today. Because he had the MRI we did not do any pressure support trials today and will start again tomorrow. I am going to try to post a video of him being wide awake and squirmy today. If it works it is very dark, sorry. Like always please pray for all the CDH families.
Love
Adam and Kimberly

More good news

2006-04-26T16:24:00.001-07:00

Hi things are still going really good. We learned yesterday that his kidneys are actually in better shape then we first thought. We met Dr. Roth the urology surgeon, and he said that about 70% of babies with the same type of obstruction that Jackson has don't ever require surgery. So for now it is a watch and wait kind of thing. The urologist says that typically as babies grow these obstructions go away. He will just keep having sonograms on his kidneys. Jackson is acting like he feels so much better the last couple of days. They have been able to decrease his ventilator settings some. We have even started ventilator pressure support trials again. He did 2 hours of just pressure support yesterday and did great, so today he did 4 hours. He did so good today, he kept his saturations anywhere from 97-100%!!!!!!!!!!!! They usually up the percent of oxygen the ventilator is giving him during these trials but he was actually on less today during the trial. We have learned that the yeast he has is an aggressive type of yeast so he will have to be on IV medication for that for 6 weeks. Other then that all good news today. Thanks for reading. Please continue to pray for all the CDH families out there.
Love
Adam and Kimberly

Test Results

2006-04-24T23:18:00.000-07:00

Hi everyone. As you know Jackson had a lot of tests today. The echocardiogram (sonogram of heart), as well as the sonogram of the kidneys showed no yeast growth, yeah!!!!!! He also had a kidney function test today. This is where they put a dye in his blood, watch his kidneys absorb it, and then drain. The good news is both kidneys absorbed the dye, meaning they are both functioning. The bad news is that they both drained too slow. They said they expect a healthy kidney to drain in 5-15 minutes. His left kidney took about 18 minutes and his right took about 30. We knew his right kidney was most likely obstructed, and thought he might have a slight obstruction of his left. So basically these are the results we expected. He will have to have surgery done on his right kidney, and most likely his left as well. His oxygen saturations have been great today, and they were even able to decrease his ventilator settings a little. They have also upped his feeds to 14.5mls per hour, and were able to take him off his TPN and lipids (IV nutrition). This is very good news. Overall we had a great day. Hopefully we will start pressure support only trials again this week. Thanks for reading, and praying.
Love
Kimberly and Adam

Rollercoaster ride continues

2006-04-23T21:42:00.000-07:00

They told us it would be a rollercoaster ride and Jackson is definitely taking us on one. As you know Jackson was doing very well but recently was becoming agitated and not maintaing his oxygen saturations quite as well. The good news is we think we have the reason. The bad news is Jackson has a yeast infection in his blood. The yeast infection is concerning because it can grow in his heart, kidneys, or brain. The doctors have checked the CSF (fluid around the brain) for yeast and it is currently negative. They will check his kidneys and heart tomorrow to see if there is any yeast growing. The good thing about yeast is that it is treatable. The bad news is yeast is hard to kill, the medication can have serious side effects, and he will have to be on the medication for probably 2 to 6 weeks. One other new development is that Jackson is now having PVC's (irregular heart rhythm). The doctors are unsure whether it is the yeast, medication, or something else causing the PVC's. One good thing is through all of this Jackson has been maintaining his oxygen saturation levels and has not had to require any additional ventilator support. The doctors say this is good for a baby with an infection like this. Jackson is still tolerating his feeds and is now up to 12.5 ml of breast milk per hour.

Please continue to pray for our family and all the other CDH families out there.
Love,

Adam+Kimberly

Quick update

2006-04-19T22:07:00.000-07:00

Jackson is still doing okay, although his oxygen saturation levels have not been as good the past two days as they had been previously. For the past two days Jackson has been staying mostly around the low to high 80's, with his oxygen support being increased from 30% to between 40-50% depending on his agitation at the time. His morphine has been weaned a little bit so perhaps this is causing little man some of the agitation. For the time being they have held off on the pressure support trials. There is talk of changing out his ET tube with a bigger one but Dr. Adcock doesn't want to do this just yet. Although Jackson is still having some kidney problems the doctors believe that it is a functioning and will have further testing tomorrow on his kidneys. We'll update more tomorrow as we find out more and we have more pictures to add.

Baby Sofia

is here! Please pray for this CDH baby and her family in San Antonio.

Six Weeks Old; Easter and Ventilator trials

2006-04-17T19:02:00.000-07:00

Hi everyone. Sunday was a big day for us. It was Jackson's six week birthday, Easter and he had his first pressure only vent trial. The ventilator trial went great. They had him on pressure support only for an hour and he did wonderful he pretty much slept through it, his oxygen saturation stayed 97%-99%. Everyone was very pleased. They did one again today and he did ok, not as good as yesterday but very well. He was on pressure only for two hours today. There were a couple times during that 2 hours that he got agitated and dropped his saturation a little but he would come right back up. He pretty much stayed between 85%-95%, and his gas that was done afterward was good. So we will do this again tomorrow, and so on and so on, until he can do it for 24 hours. We did get a little bad news today. Jackson was diagnosed with a dilated right kidney while he was still in utero. They have been monitoring this frequently and until today it was just little dilated. For some reason today's sonogram showed a very large dilation. The urology doctor said he will definitely need another surgery. We are unsure at this point what kind. It could be a simple obstruction, or it could be a nonfunctioning kidney. All his lab work related to kidney function is ok. There are a few test to be done to determine the amount of kidney function his right kidney has. Once those test are done I will be sure to update everyone. I know that is very broad, and really doesn't explain anything but that is all I know right now, I will let everyone know when I know more. One other piece of small news. We got moved out of our private room. We are out in the pod with all the other babies. Although we will miss our privacy this also means Jackson is doing good enough to be moved to a less critical bed space. Please continue to pray for us, I know those prayers have gotten us this far.

Please say a special prayer for Baby Drew, Jana (mom), Raymond (dad), and Elizabeth(sister) as they deal with their unimaginable loss. Please pray for everyone in this angel's life, and all other CDH families.

Quick update

2006-04-15T18:20:00.000-07:00

Hello. Not much news today, we are back to no news is good news. They have stopped and restarted his feeds again. They stopped his feeds because he was refluxing. It looked much different then I expected. He was just laying there and then all of a sudden he spit up everywhere from his mouth and nose. They changed his feeding tube from one that went from his mouth to his stomach to one that goes from his nose to his small intestine. Now all of his food goes to him because he can not reflux from his small intestine. He is now getting 2 ml's of breast milk an hour via a milk drip. His oxygen saturation remains wonderful and his gases are amazing. They are talking about starting "trial offs" from his ventilator. Basically this is where they let the ventilator give him pressure support but not breaths. They start out just a couple hours a day and try longer and longer periods of time until he can tolerate it for 24 hours. I will update when we actually start these trial offs. He is adjusting to his phenobarbitol (seizure medication) and is awake and alert more and more every day. Well I guess that's all for now, please continue to pray for us, and all the CDH families out there.
Please say a special prayer for Baby Drew and his family, he really needs all the prayers he can get right now.
Love
Adam and Kimberly

Jackson continues to do well

2006-04-13T11:36:00.000-07:00

Hello. There is really very little news today. Jackson continues to do good. Adam and I have both gotten to hold him again. I even got to hold him during one of his alert awake days. They changed his ventilator from a Dreager to a Servo. This really means very little to me. The new one is supposed to help teach him how to breath on his own and is easier to wean him off. Niether of these is the high frequency or oscillator. His last blood gas last night was the best blood gas we have had in a very long time. They have started feeding him again. He is at 5mls right now, we will see how he dose. That is really all for today. Please pray for baby Drew and his family, he has a had a rough week. Please continue to pray for us as well as all the other CDH babies and mommies.
Love
Kimberly and Adam

P.S. We would like to thank Project Linus for the beautiful blanket, it is the softest blanket ever. Jackson really likes it, I am posting a picture of him with his new blanky.

Jackson is doing good today.

2006-04-09T14:57:00.000-07:00

Hi everyone, Jackson has a had a good couple of days. As I said last time they had been changing his ventilator settings. They went all the way up to 80% oxygen on the ventilator at one point and he still was not saturating his blood as well as they wanted. They finally decided it was the morphine and put that back on its original dose. He was not going through withdrawal, he was just not comfortable with the lower dose. Since they have put his morphine back where it was he has been doing good. They have been able to decrease the ventilator oxygen % from 80% back to 50% . He was doing so good Adam finally got to hold him on Saturday afternoon!!!!!!!!!! He was so awake and alert today it was wonderful. If you looked in his eyes it actually looked like he was having fun. He was squirming all around and just looking at me and Adam. We read him 2 books and he just looked at us. The only bad thing about a day like today is when I look at him he does not look sick and I just want to take him home. I know he is getting better and we will be able to take him home eventually. I am posting some pictures of Adam holding him, Aunt Catherine reading to him, and him being awake. Thanks for reading, and please continue to pray for Jackson, and all the other CDH babies and mommies out there.

Hello Everyone

2006-04-07T17:15:00.000-07:00

Hi guys. Jackson remains stable. He continues to drop his oxygen saturation, mostly just when someone messes with him. Because he continues to do this Adam has still not held him. They think he is doing this because he was on steroids for a few days. The steroids are now getting out of his system, which is making it harder for him. They have increased his oxygen percentage on the ventilator from 30% to 50% and his breaths per minute from 30 to 40. He appears to be doing ok with these settings. They also say he might be withdrawing from the morphine, which they are starting to wean, which could be causing some problems. He was not tolerating the 15mls of food very well so he has been backed down to 10ml every 3 hours. He has also had his first bowel movement since surgery which is a very good thing. Because all of his intestines were manipulated there was a chance of having a bowel obstruction. Well I guess that's about all for now.

Jackson is 1 month old today!

2006-04-05T21:47:00.000-07:00

Since coming off of ECMO on Saturday April 1st, Jackson has been stable. Jackson's blood gases and oxygen saturations continue to do well, though he did drop his saturations a little today for some unknown reason but seems to be bringing them back up. Since he started taking medication, Jackson has not had any more seizures after he had experienced some on Friday afternoon/evening the day before he came off of ECMO. The doctors seem to be adjusting his ventilator settings quite a bit in an effort to find the right balance. Jackson started taking feedings through a tube on Monday April 3rd. He started at 4.1 ml of breast milk on the first day and has done well enough that the doctors have gradually increased his feedings to the current amount of 15 ml per feeding every 3 hours. Both of Jackson's chest tubes have been removed as well as his umbilical catheters so now he has a real belly button! The best news is that Kimberly got to hold Jackson for the 1st time on Tuesday night for 3 hours! Jackson seemed to like being held by his mommy as he kept his oxygen saturation levels in the mid to high 90's! I still have not been allowed to hold my son as it is quite a production for the nurses to get all the tubes, wires, and vent lines moved so only mommy got to hold him Tuesday night. Today was supposed to be my turn to hold Jackson for the 1st time but because of his oxygen desaturations I will have to wait for a little while longer. Although Jackson is now off of ECMO and doing well he still has a ways to go. Please continue to pray for Jackson, all thoughts and prayers are greatly appreciated. Thanks for reading.

Love Adam and Kimberly

ps- Please continue to pray for Lauren (Avery's mom) and her family as they are going through a very difficult time in their lives.

Please pray for Avery

2006-04-03T10:20:00.000-07:00

Hi everyone. I have a friend in Toronto whose name is Lauren and she had baby girl Avery on March 17th. Avery also has CDH. When reading an update on Avery this morning we learned she is not doing well. Please everyone pray for this sweet baby, and her wonderful family. I have a link on my page to Avery's page if anyone wants to read it. Please, I know everyone's prayers have helped us and I know Avery's family needs them now. Thanks everyone.
Love
Kimberly and Adam
P.S. Jackson is doing GREAT!

No more ECMO!!!!! Lots of pictures

2006-04-01T17:25:00.000-08:00

Ok these pictures are not in order. Obviously from the first pictures you can tell he is off ECMO!!! You can see the side of his head that we have never seen before. He is doing so good! All of his numbers are staying wonderful, and he is doing great!! Adam and I were allowed to change his diaper for the first time by ourselves. The other pictures are from around the surgery date. He found his thumb and was actually able to suck on his thumb. The pictures of us kissing Jackson are also right after surgery. The last is him looking at and loving his Ernie doll, he stares at it so intently. Well I guess that's all for now. Please continue to pray for us, I know it is the prayers that have gotten us this far. We are doing great today and are very happy.
Love
Adam and Kimberly

Long post, Ups and Downs

2006-04-01T09:53:00.000-08:00

Hi everyone, sorry not to post in so long. Well Jackson's surgery went great. He did lose quite a lot of blood, and was very critical after. The doctors said that due to the previous infection that caused his abdominal cavity to swell there were adhesions that made the surgery more difficult. The day before surgery the doctors told us that surgery would take 2 to 3 hours, Jackson's took almost 6 hours, the longest six hours of Adam and my life, but we were updated frequently. The surgeon, Dr Olutoye, said he had about 1/3 of a diaphragm, the rest is now a patch. He also said after removing all the adhesions his lungs opened up nicely and everyone was impressed with the amount of lung tissue he had. Typical of CDH babies he did great right after surgery. By the next morning however he was a little less stable. His oxygen saturations were not where they needed to be. Although he was stable he continued to drop his saturations from time to time, and sometimes his numbers would stay down. This continued through Wednesday and Thursday. On Friday morning while they were suctioning out his ventilator tube they got out a large amount of mucus that had apparently been blocking the tube, after that he was amazing, he was like a different baby. Both his oxygen saturations were 100%. The doctors were so pleased that a couple of hours after this they did a trial off the ecmo machine, he did wonderful and kept all of his numbers great. After the trial off we were told that he had done so well they expected to do another the next morning and he would come off the next afternoon. So Friday went great until about 5pm. Around 5pm Adam and I noticed a little twitching on his right side, his right arm, leg and eye muscle were twitching. At first the doctors and nurses were not that concerted, they said it was probably because his calcium levels were low so they gave him calcium. The twitching continued after the calcium and we asked to speak to the doctor, while we were talking to the doctor he saw the twitching, after he saw the twitching he agreed that it was concerning and ordered a head sonogram and an EEG. The head sonogram showed a normal brain, the EEG however showed seizure activity. They immediately started him on medication to stop the seizures. They said the seizures are not hurting him, the problem with seizures is that people will stop breathing but he is on a ventilator so he will breathe. The concern now is what is causing them. They said sometimes babies that have been on ecmo for a long time will develop seizures and they usually go away a week or so after being off. That's all we know about the seizures at this point. OK back to good news. He had no more seizures after the medication and he will stay on that for a while, and hopefully that will keep us seizure free. He had a wonderful night and all his numbers stayed great, they were actually so good they decreased his ventilator settings. They did the second trial off this morning, and he passed with flying colors. We are not waiting on the surgeons to come take the cannulas out of his neck. So by this afternoon we should be off ecmo!!!!! Well I know that was long post sorry, but a lot happened. We are headed to the hospital now. Thanks for reading, and all your thoughts and prayers.

Surgery OVER

2006-03-29T15:52:00.001-08:00

Dr. Olutoye came out about 2:30 this afternoon and said Jackson had done well with his surgery. They had to deal with a lot of adhesions because of the infection Jackson had experienced. The surgery was successful and all abdominal organs were placed in the abdomen and the diaphram was fixed--only about 1/3 of it was there and a gortex patch was used to fix it. Dr. Olutoye said there was quite a bit of lung tissue, but Kimberly can explain better tomorrow. Because Jackson is still on Ecmo there was quite a bit of bleeding & he is currently stable but pretty critical. His Mommy and Daddy won't leave his side right now. Jackson's grandparents are going to take them some dinner pretty soon. And we are sure Kimberly & Adam will update you again tomorrow as to Jackon's condition.

With constant prayer,

Bill, Cheryl & Sheila

Surgery scheduled

2006-03-28T19:46:00.000-08:00

We found out today that Jackson will have surgery to repair his diaphragm on Wednesday 3/28 at 8:30 am. Jackson is still on ECMO which means he is still on blood thinners, which means there is a bigger risk of bleeding. Jackson remains "critical but stable". His surgery will be done in his room in the NICU. I will post an update regarding his surgery as soon as I can, Adam and I are planning on staying at the hospital tomorrow night. Please pray for Jackson, we can not tell you how much all of your prayers mean to us. I guess that's all for now. Thanks everyone.
Love
Adam and Kimberly

Jackson is 3 weeks old

2006-03-27T09:50:00.000-08:00

Hey guys yesterday was Jackson's 3 week birthday, and he got a HUGE present. A new ECMO machine! He has now been on ECMO for 3 weeks, there is a part of the machine that wears out in about 2 weeks, we were lucky that Jackson's lasted as long as it did. It was a major production to change the machine. It took a whole OR team (surgeons, nurses, anesthesia etc) plus 2 ECMO people, a neonatologist, and I think there were more all in our small room. The procedure was not that big of deal for Jackson, just everyone else involved. However the new tubing disturbs his clotting balance, so he is getting a lot of platelets. After the procedure he required a lot of fluid, mainly blood products. He got around 400mls of red blood and other blood products, because of this he will be VERY swollen for a couple of days, he is also kind of a purple red color because of all of the blood. I am now calling him my blueberry baby because of his color and size. He has however asked that I not take pictures of him in this state. Adam and I got him a stuffed Ernie a couple of days ago for him to look at while he is awake. I don't think we are really supposed to have it in there, but we only get it out when he is awake. He seemed to love looking at the bright colors. We took a picture of him with Ernie and will post it next time we post pictures. They are saying that right now no news is good news, he is still critical but stable. They are thinking about repairing his diaphragm while he is on ECMO and possibly soon, it is still just talk though. Well I guess that's about it for now. Thanks for reading, and all the continued thoughts and prayers.
Love
Kimberly and Adam

Beautiful Alert Baby

2006-03-23T11:03:00.000-08:00

Hey everyone. These pictures are from yesterday (3/22). Even though his oxygen was low, he was so alert. Jackson is doing ok today his ventilator tube apparently moved a little, they moved it back and his oxygen levels are back up. The plan at this point is to get his oxygen levels up then try to decrease his ventalor settings so he can rest a couple of days then try to get him off ECMO again. We are on day 18 of ECMO, and everyone really wants him to come off. Well I guess thats all. Thanks for reading.
Love, Kimberly and Adam.

No second trial off

2006-03-22T13:57:00.000-08:00

Hey everyone, Jackson had a rough night last night (3/21), so no second trial off today. Jackson had a trial off on Tuesday (3/20) and it went fairly well. It went well enough that they changed a lot of his ventilator setting and decreased his ECMO flow. However he did not tolerate all of these changes plus the trial off by about 3pm on Tuesday he was not doing as well. Because of this we did not do a second trial off today. They put all of his setting back to what they were before the trial off and said they were going to let him rest at those settings until he tells us he is ready to try again. He had a long period of peaceful awake alert time and we took some great pics I will try to post them later this evening. Thanks for reading, Please continue to pray for us.
Love
Kimberly and Adam

2006-03-20T16:17:00.000-08:00

Hey everyone. More pics. Most of these pictures are from the 19th, his 2 week birthday. He continues to do wonderful today. He is actually doing so well we are going to try another trial off tomorrow. I will try to update the site tomorrow and let everyone know how the trial off goes. The doctors and nurses all seem optimistic. Well as far as the pictures go the one to his left is of his whole body so you can see how swollen his abdominal cavity has become. It is doing better though. There are also some pics of his beautiful hands and feet, his fingers and toes are so long. The only pic we could get of his hands has a monitor on it so there is a red glow. Well I guess that's all for now. Thanks for reading. Love Kimberly and Adam.

Long couple of days but better now

2006-03-18T17:25:00.000-08:00

Hi everyone. After the second trial off Jackson seemed to go downhill. He would drop his oxygen saturation for no reason and it would take him a long time to recover. We also noticed that his abdominal cavity was beginning to swell. The did chest x-rays to make sure none of the tube had moved, and an ultrasound of his belly to see what was causing the swelling. The chest x-ray showed no change. The abdominal ultrasound (sonogram) showed fluid in his abdominal cavity. They are not sure whether the fluid is blood or infection. They have tested his blood for infection and it came back positive. They this does not necessarily mean Jackson has an infection but it is likely. They started him on two types of antibiotics a couple of days ago because he was dropping his oxygen saturation for no reason, just in case. The night of 3/17 he seemed to be doing worse. His abdomen was even more distended, and his oxygen saturation was very unstable. He would take a lot longer to recover after his saturation dropped. They even tried to manually bag him to get his oxygen back up, this worked a little but not great. They finally decided to change the setting on the ventilator, leaving more pressure in his lungs after each exhale. This finally started to work. His oxygen began coming back up. It took about an hour, but his oxygen went from 60% to about 80%. By 5am on the 18th his oxygen saturation was staying in the 90s. He was able to maintain his oxygen saturation all through the 18th, and so far today the 19th. He was even stable enough to change his linens. When they changed his bedding his oxygen did not drop at all. He is much pinker and looks like he feels better today. Everyone thinks that the antibiotics are starting to work and he is getting over his infection, which will make everything improve. They have been measuring his abdominal circumference and it has been fluctuating, they say that is not unexpected at this point. His abdomen looks much better though, it does not seem near as tight or shiny.
So in summation we had a very rough couple of days, and Jackson was very critical. Jackson now seems to be doing so much better, and appears more stable. All of his numbers; blood gases and oxygen saturation have all improved immensely, and have been stable for 2 days (18th and 19th). He looks much better the last couple of days. We took some pictures this afternoon, and I will post them this evening. I am so sorry for not posting for a couple of days, we were just busy. Thank you everyone for your thoughts and prayers they are greatly appreciated and I know they are helping, please keep them coming. Sorry this post is so long.
Love
Kimberly and Adam

Trial Off update

2006-03-16T21:54:00.000-08:00

Hi everyone. We did our first trial off of ECMO yesterday (3/15). It went really well. He dropped his oxygen saturation a little but it came back up and his gases where not affected. So we went to our second trial off today (3/16). Today was a totally different story. He had dropped his oxygen saturation during the night a couple of times for no reason and his oxygen saturation stayed fairly low after that. They tried again anyway this morning. His oxygen saturation dropped so fast and so low, they stopped the trial off almost immediately. After that they changed his vent type, and restarted the nitric oxide, they also started him on antibiotics, just in case he has an infection. They have also done an EEG to check for seizure activity, there was no sign of any. So although today was a set back we are staying positive and doing well. The doctors do not want to try anymore trial offs until Monday. Please continue to pray for us, and think about us. We appreciate everything everyone has done for us. Thanks for reading.
Love
Kimberly and Adam