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.