An internet friend’s family is going through a horrible time. Her granddaugher was born very early, think micropreemie, and has spent the last 6 months in the NICU. She has developed a heart issue and infection. It has been suggested that they take her off of life support. Oh the emotions from three years ago came rushing back. I know exactly what they are going through….
For those of you that do not know in Janaury 2005, I gave birth to a son, Andrew Sean, at 25 weeks. Now Andrew had a lot of issues stemming from some sort genetic syndrome. We could never find out what exactly it was, but they are thinking it was a bilaterallity misfire. The left side of his body had all the issues, fused ribs, missing rib, missing thumb, and an extra toe. His heart had an extra chamber (tri atria to be exact). Well when he was born he had a PDA. Basically the fetal heart/lung circulation wasn’t shut down after birth. This throws the blood pressure off. This led to a brain hemorhage (not uncommon in these micropreemies, but the PDA almost ensured it would happen). This caused hydrocephalus (extra fluid on the brain). During all of this we found out he also had an issue with his intestines. We weren’t sure at the time what the issue was, but he could not be fed by mouth. Now the IV feeds, called TPN, used long term cause liver damage. All this was on top of the normal lung issues these micropreemies have.
He had to be transferred to a different hospital because of his brain issues. We were finally we were able to do surgery to find out what was going on with his intestines. Turns out he had a malrotation (where the intestines are backwards) and a jeujunial atresia with an apple peel deformity. Basically his intestines had split high in the small intestine, only one major blood vessel and the intestines wrapped around it like an apple peel or Christmas tree. NOT a good thing. The surgeon repaired it and we held out hope. After another month things still were not looking good so they went back in and found out the intestines had atrophied (died). So he was left with only 4 inches of small intestine. (We need around 25 FEET to survive). This was in March. So we dealt with all of those issues and then the hydrocephalus started to get worse and they were not able to do anything about it because of the intestinal issues.
He then developed an infection that led to menigitis. Things got progressively worse as his liver started to fail. He began having more breathing issues and he had to be intubated again. At that point I knew Andrew was telling me he was tired of fighting and wanted to go home. So Richard and I had to make the hardest, yet most loving decision to take Andrew off of life support.
So on July 5th we went to the hospital for the last time. Held him and told him we love you and watched him pass into heaven. I know he is whole now and in a much better place, but I still have a piece of my heart missing here on Earth.
Andrew you are still loved and missed greatly.
Andrew in March at about 6 weeks of age just after his 1st surgery
Andrew in June. 1st time Richard held him.
Andrew in late June, before the infection got worse. Best picture of him!