Birth Day: March 31, 2012
Liliana Berry made her arrival at 8:09 pm weighing 6lbs 7oz and 19 inches long.
At 6am that morning I woke up thinking my water broke. We went to MUSC and I was admitted at 11:30am and they started pitocin because my water had broken but I wasn't having regular contractions. By a little before 8 I was ready to push and Miss Lily arrived shortly thereafter. She was delivered in the OR and then taken to the stabilization room. I saw my baby girl for a few seconds before she was taken away from me, blue....
Her first APGAR score was a 4. She was intubated within 1 minute of her birth and then had an APGAR of 8. Two hours from her birth she was finally stabilized enough to go up to the NNICU. They brought her in for us to see on her way up. My heart broke as my baby girl was taken away from me and me not knowing in what state she would be in when I saw her again.
April 1, 2012 Day 2
Shortly after midnight we went up to the NNICU to see our Lily. They were having lots of trouble getting the bowel in her chest to decompress (lots of air in it) which was affecting her lungs. Finally they were able to get most of the air out of it and she stayed kind of stable for most of the day but she was on very high ventilator settings. We took a break from the NNICU for dinner and one of the neonatologists came down to talk to us.
In order to keep her stable and with decent blood gases, they were having to give her "volume" meaning they were giving her saline boluses to increase the volume in her blood vessels. Her blood pressure was also sky high and she was having trouble oxygenating her blood. They came in to get permission to do a blood transfusion in the hopes of increasing her blood volume and possibly decreasing her blood pressure and improving her oxygenation. While he was in the room he decided to go ahead and talk to us about ECMO while things were not emergent and to obtain our permission to put her on it if necessary in the future. We sign all of the consents and then go back up to the NNICU 30 minutes later. This is where things get worse.......
While the doctor was downstairs talking to us things took a turn for the worse. Lily was getting more and more unstable and ECMO is now a very real possibility. She has pulmonary hypertension, meaning that the blood doesn't want to go from her heart to her lungs because the blood vessels are very constricted. That is why she is having trouble oxygenating her blood. However, the blood transfusions help and she is sort of stable for the remainder of the day.
April 2, 2012 Day 3 becomes ECMO Day 1
The entire day she was unstable. They kept trying blood transfusions, blood pressure medications and even inhaled nitric oxide (to try to open up the blood vessels to her lungs) but absolutely nothing is working and she was going downhill. The decision was made to put her on ECMO. ECMO is extracorporeal membrane oxygenation and is a type of bypass. Two cannulas were placed in her neck in the jugular vein (to return oxygenation blood) and carotid artery (to remove her blood) to place her on the machine. Her blood was oxygenated by the ECMO machine and then returned to her body. This allowed her lungs and pulmonary arteries to rest so that the pulmonary hypertension could resolve over time. At this point we had no idea how long she would be on or if ECMO would even help her. The nurses told us that this treatment was reserved for the sickest of the sick and was a last resort. Lily was put on ECMO at 10:30pm
April 3, 2012 Day 4 and ECMO Day 2
Well this last resort is exactly what Lily needed because she stabilized after being put onto ECMO. This day was hard because it was great to see her stable but hard to see her with all of her blood being taken out of her body and her starting to become puffy (a common side effect of ECMO).
April 4, 2012 Day 5 and ECMO Day 3
Lily finally opened her eyes today! She was continuing to have great blood gases and was stable all day. She also started moving around more and was kicking her legs and moving her arms. When babies are on ECMO, they usually get puffy due to excess fluid buildup from the body having to process twice the body's blood volume. Today they had to start using the "dialysis" component of the ECMO machine to pull more fluid from her tiny body.
Tomorrow I will update days 6-10. As of today (April 22) she is doing great for the stage of recovery she is in now. She is post-surgery day 5 and is starting to feel less pain (requiring less medication) and is remaining stable.
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