Surgery Day? Maybe?

Monday morning we woke up still not sure if today would be the day for Makenna's surgery.  We called the NICU and they said that her surgery was schedule to begin in 30 minutes.  We raced to the NICU hoping we would at least get to see her for a minute or two before it was time to begin.  When we got there they told us that another baby was just brought in and needed Dr. Kays for emergency surgery, which meant Makenna's surgery was pushed back.  Part of me was disappointed because I just wanted the repair surgery to finally be over, but part of me was very thankful to have a little more time with my baby before her big day.  They allowed us to stay with her until 11:30 when it was time to began prepping her for surgery.  Thankfully they are able to preform the surgery inside the NICU so she didn't have to be moved, but unfortunately that meant anyone in her side of the NICU must leave.  So while we were sitting in the waiting room waiting for her surgery to be over, a few other families were also waiting for her surgery to be over as well. We began talking to the other families in the waiting room and doing anything we could to keep our nerves at bay the best we could as we started our long 4 hour wait.  But I must admit we were both very worried about our sick little 11 day old baby, even though we knew she was truly in the hands of the best pediatric CDH surgeon in the country and his team, all of whom are also very experienced in the repair of CDH.  While we waited they were very good about coming out and giving us updates along the way, this also helped keep the "what ifs" out of our minds.  

The surgery is actually pretty straight forward, but that doesn't mean it is easy or without risks!  What they essentially do is make an incision (about 2.5 inches) along we rib cage, take the organs out of her chest and return them to her belly where they belong, close the hole in her diaphragm using a gortex patch, and then close the incision. 

During the surgery they discovered that Makenna was in fact much more sick than they had originally thought, hence the need for ECMO.  If you remember they had estimated the likelihood that she would need ECMO to be about 10%, but she ended up needing it to save her life after just 24 hours.  This was our first clue that her CDH was more severe; however, before the surgery they didn't know why or to what extent.  Once they opened her up they discovered that in actuality she only had about half of her diaphragm, so all of her intestines and half of her liver were able to travel up through her hole into her chest.  Also, since she had so much in her chest, her right lung growth was restricted and it is only about 1/3 of normal size.  All of this means that on the CDH spectrum, what they thought was a mild/moderate CDH (right-side, liver down), is actually one of the more severe types (right-side, liver up).  The liver is very dense so it restricts lung growth more than soft organs (like the intestines) and it doesn't like being moved, where as other organs don't mind being relocated. 

Thankfully we knew about Makenna's CDH ahead of time and were able to get to Shands before she was born.  This allowed her to be under the care of Dr. Kays from the beginning.  He is a miracle worker and he put everything back where it belonged.  I seriously can't explain how thankful we are for Dr. Kays, his wonderful fellows/partners, nurses, and the rest of his team.  Their devotion to CDH literally saved our babies life.  We are also equally as thankful to everyone who has been thinking about and praying for our little miracle this whole time.  You also had a hand in saving her life!

After surgery they removed a sensor from her hand--so we could hold her hand for the first time!  :)

Holding her daddies hand after surgery!

Holding my hand!