Surgery OVER

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

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

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

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

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

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

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

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

TODAY'S (3-14) UPDATE

Hi everyone. Last night was difficult, his oxygen saturation was dropping and we could not figure out why. It turns out it was because he was doing better. His heart was actually pumping more blood to his lungs than to the ECMO machine, because the ventilator setting was so low his lungs were not able to oxygenate all the blood. So they increased the breaths the ventilator was giving him and he has been doing great since. His oxygen saturation has been 100% since they did this and all his blood gases are great. They have turned down the flow rate on the ECMO machine twice and everything continues to stay wonderful, so we are going to do a "trial off" from the ECMO machine tomorrow morning. This is where they turn off the ECMO for 15 minutes at a time and see how his body reacts. If he does well they will do it again the next day. If he does well the next day as well they will attempt take him off ECMO completely. So we could possibly be off ECMO on Thursday. Right now this is very good news but still all a big possibility. I will update tomorrow and tell everyone how are trial off went. I guess that's all for today. Night night everyone.
Love
Kimberly and Adam

Happy Birthday Jackson

Today is Jackson's birthday, he is one week old! He was great this morning he was so alert and active. He had his eyes wide open and was so interested in his mommy and daddy. He is so beautiful. They gave him lasix (anti-water drug) it really helped with the swelling, he could open both eyes so big. They keep telling me that no news is good news and that's where we are. I am recovering well from my surgery so I guess everyone is doing well. Well I guess that's all for now, thanks for reading.
Love
Adam and Kimberly

More Pictures!

Top left-Aunt Catherine with Jackson
Top right-Mom and Dad with their baby boy
Middle left-Jackson sucking on a pacifier
Middle right-Check out that hair!
Bottom left-Jackson about an hour after he was born and before being on ECMO

TODAY'S UPDATE

Hi everyone. Thank you so much for reading and adding comments, I really miss talking to you all and this way I feel like I am talking to you. Well it is Thursday night and I got discharged from the hospital this afternoon. I got to stay 3 nights because my tummy was so bloated and distended.
Jackson ways born March 5 at 3:15. His first few hours were very good, and he remained stable on the vent. His oxygen saturation began dropping a couple hours after delivery. After an x-ray it was discovered he had a pnuemothorax (collapsed lung) and he got a chest tube. He was once again stable for a few hours. His oxygen began dropping again after a few hours and after many interventions the decision was made to place him on ECMO ( a machine to oxygenate his blood). Because of the ECMO his head has to remain on its left side. Because of the machine and lack of movement his head is swelling, this looks awful but is harmless. He has been alert and active, and his vitals signs are staying stable.
Jackson continues to do very well. He is very alert and active, which I love but the doctors and nurses don't. Jackson has had some clotting issues which is normal for ECMO babies. Because of these issues he has received some plasma and some platelets, and remains on an increased dose of heparin. His activity level has caused them to sedate him more, they had to add Ativan to his sedation meds (fentanyl and morphine). When he becomes too active his vitals change and his oxygen saturation decreases. The neonatologist today said no news is good news. So basically he remains stable and on ECMO. He is so beautiful and I love him so much, he is wonderful. I guess that's it for now, I will update more now because I am out of the hospital. I will have Adam add pictures soon. Thanks for reading.
Love
Kimberly

Pictures!!!! Woo Hoo!

Hey everyone. Here are a few pictures to tide you over! The first one is of Kimberly holding Jackson's hand, the next one was taken from above, third is the huge ECMO machine and the one below is Jackson. Isn't he awesome!!!! You can kind of see in the last one how his chest is big and his abdomen is little because it's empty. We'll post more when we get them : - )

ps. Those of you that know Kimberly can obviously see whose nose he got-hehe.

Birth Day

This is Grandma & Grandad Lewis, along with Aunt Catherine. Kimberly & Adam & Jackson are fine. Jackson was born by ceasearan Sunday, March 5 at 3:15 p.m. He weighed 7.3 pounds. He was immediately taken to the NICU and stabilized. He did pretty well most of the night, but needed to be placed on the echmo machine about 3:00 a.m. Mon. morning. He has remained stable & alert since. Even tho we are grandparent & aunt, we must tell you that Jackson is the most beautiful baby. He is amazing. We are going to try to post pictures now & will fill in with more detail pretty soon.

Hi

Hi everyone. Adam and I continue to do well. We moved AGAIN! We are in a much better place and I am much happier. For that I wanted to thank Theresa at medical travel assoc. she has been amazing. We are much closer to the hospital, and it is like an apartment, it's big and opens to the outside so the dogs don't hear anything so they don't bark. Everyone is much happier here. I have a cold, this is an awful time for that. 9 months pregnant and sneezing all the time and anyone who has been 9 months pregnant knows what that means. No new news from the doctor. Still going to the hospital on Monday 3/6 for Cytotec (pill that starts contractions), hopefully we will deliver Tuesday evening. Thanks for reading.

P.S.- still can't post pictures as the computer says it does not recognize the camera. Anyone know how to fix this?