That being said, Dr. Kays warned us that the first 48 hours after surgery would be rocky and we quickly discovered that he wasn't kidding. Makenna's stats were pretty good on Monday; however, by Tuesday her body started having trouble getting rid of carbon dioxide. She was able to breathe in oxygen with the help of the ventilator, but she wasn't expelling the CO2 appropriately. A healthy baby should have CO2 levels between 30 and 40 while a baby on a vent usually has levels between 50 and 60. Makenna's blood gas measured her level to be 78. They decided to remove her ossilator and put her back on the regular ventilator. After this change we waited an hour for another blood gas to be taken. This time it was 76---better but not great. They made more changes, we waited two more hours, and discovered it was 74--they were happy the numbers were creeping down, but it just wasn't low enough. The process of attempting to find the right vent setting continued throughout the day and into the night (so stressful)! Although, suddenly at about 8pm the numbers started creeping in the wrong direction. They went from 74 to 84 and then by 3am they were up to 95---triple the "normal level" for a baby off a vent and double for a baby on a vent. What worried us more than anything was the fact that they were supposed to do surgery to take the ECMO cannulas out of her neck, but because of these numbers they decided to postpone the procedure. They wanted to leave the cannulas there incase they couldn't get the levels under control and she needed to go back on ECMO. Not good, although the Dr. assured us that while her CO2 levels were undesirable, this is something they do see often with DH babies. They also said that they didn't foresee a need to go back on ECMO, it is just a precaution, so that helped---a little.
On Thursday it was crucial that they get the levels down to avoid ECMO, so they decided to put her on nitric oxide. From my very basic understanding the nitric oxide helps dilate the vessels in the lungs and allows them to do their job more effectively. They attempted nitric oxide with her when she was 1 day old to avoid going on ECMO, but it didn't work and she ended up on ECMO the next day. I worried that we would have repeat results. Thankfully this time we started seeing an improvement immediately and her levels started creeping back down. They then did the surgery to remove her ECMO cannulas (YAY!). I can't believe my 14 day old baby has already had *5* surgeries. She is definitely an amazing and strong little girl.
By Friday her blood gas was down to 65 and they began slowly weaning her off the nitric oxide. It started out at 20 parts per million then went to 1 part per million. Even with this drastic reduction her blood gas came down to 41! We hope she can maintain these levels once the nitric oxide is removed, but for now I am proud of my baby. She had a good day today. Her stats were all good and she spent several chunks of the day with her eyes open and very alert. This whole CDH process is so slow and tedious. Lots of ups and downs. It is hard to see the progress she is making, but I have to just keep reminding myself that even on days she has "downs," she is still making huge strides towards getting better and coming home.
 |
| Wide awake after her ECMO cannulas were removed! |
 |
| Words can't describe how much I love this little miracle! |
Hi Olivia,
ReplyDeleteI just found your blog by chance today when I was searching for an update on a baby I know who was treated by Dr. Kays. I read and immediately identified with you and Makenna and wanted to reach out to offer support.
My daughter Dakota (now almost 5 years old!) was born with Right-Sided Congenital Diaphragmatic Hernia and was treated by the brilliant Dr. Kays! I live in Marco Island, Florida, about 5 hours south of Gainesville. She was diagnosed at 29 weeks and I immediately started my research and found Dr. Kays. I met with him at 31 weeks and was given a similar prognosis to you. Dakota also had her intestines and a portion of her liver in her chest (turned out to be 40%) and was moderate to mild on the spectrum. HOWEVER, Miss Dakota decided to make an unexpected appearance on Christmas Day at 32 weeks and 5 days in our local hospital. By the time I knew she was in labor, she was here! They intubated her immediately and then called Dr. Kays. He sent down Shands Air to pick Dakota up and she had a stabile first night. On her second day she began crashing. I got the call at around 3pm when I was trying my best to get discharged and get up to see my baby from Dr. Kays that he was asking for my consent to put her on ECMO. I consented immediately and by the time we got up there that night Dakota was stabile on ECMO. On her 3rd day on ECMO the cannula in her neck began to shift (probably due to her premie size) and there started to be clots in the machine. While the machine was unable to manage the flow, Dakota remained stabile so they made the call to take her off of ECMO before expected. She had surgery on her 13th day of life. Was taken off the ventilator and onto C-PAP about a week later. She had a hard run on C-PAP with a couple of desatting episodes and she hated the darn thing, but we made it through! She was on the nasal cannula after about 14 long hard days on CPAP! We spent a full month getting her to take enough to gain weight and then left Shands and all the lovely people there after 60 days without a feeding tube but with nasal cannula oxygen for the next month.
Today Dakota is a beautiful, healthy, normal almost 5 year old! She is in Pre-K and is one of the smartest, if not the smartest in her class! She has no problems breathing and runs around like all the other kids. We go for a checkup with Dr. Kays every other year now. We are looking at small things like slight scoliosis and a pectus, but nothing big *knock on wood*.
I remember sitting in NICU III, watching the machines, living by the numbers, smelling those smells, staring at the wonderful nurses and waiting for each blood gas .... at that time I couldn't even imagine Dakota as a healthy toddler. I promise you, time will pass, and every day will get better and before you know it, you will be in NICU II working on eating and then home!
I adore Dr. Kays and the nurses at Shands! They are my heros! Tony always was a calm and knowledgable comfort, Andrea knew exactly how to position Miss Dakota so she could breath better, Sally always offered an "A" and a warm hug on a hard day ....there were so many others. NICU life is strange ... having a CDH baby is strange and hard ... but it's peculiarly wonderful and an amazing and life changing experience.
I am praying for you all and Makenna and praying that today is a good day!!!! Please call me at (239)304-6074 or email me at jennifertrafton@hotmail.com if I can help in any way or if you just feel like venting. I know I clung to the survivor stories like a security blanket in the hard days.
Many, many prayers!
Jennifer
Mom to Dakota 12-25-2008