We learned for certain that not one but that both of our sons will have to have the surgery to repair the vessel in their hearts. The team is hoping to do this on Tuesday. I feel very conflicted about this. Obviously I do not want them to have undergo any surgeries, they are so little, having just tipped the scales over two pounds each. I think about Alex who has already had to undergo and recover from one surgery already in his very brief life, now another one. The other part of me is feeling strangely relieved at the thought of surgery because hopefully this means having them finally get better and start to make gains.
Because perhaps that is not enough to worry about, we also received a phone call from the hospital at two in the morning sharing concerns about Nicholas and problems with his intestines. Originally I think they were concerned that this was very serious but seems by the time we got there this morning, they had ruled out the most severe causes. It looks like the liver is producing bile that is not going through the intestines but getting backed up in the stomach. They are still not clear what this is (infection, blockage?) and are running more tests. It could be a side effect from the medication that they had been using to try to close the vessel in his heart. We are anxiously waiting to hear word from the surgeon and praying that this doesn't delay the treatment/surgery that he needs for his heart.
The hardest part perhaps in all of this for me at least is watching my baby become more expressive. Both boys are becoming more alert at times, but Nicholas in particular is now showing me signs that he is feeling distress. He has had even more scans, blood work, pokes and prods by numerous hospital staff the last couple of days and I've actually seen him grimace and frown and look like he could cry if he were able and ofcourse seeing this, is enough to pull my heart right out.
At some point, I'm sure every parent with a sick child wonders why their son or daughter has to be the one struggling such a path, whether that child be an infant or an adult. Life just seems to have a way of asking questions that we will never learn the answers to. It is in these dark moments that the feelings of anger, bitterness, fear, sadness, and guilt all surface. I wonder why my body did not provide a better environment for my children to stay and grow, why it couldn't be a safe haven for them but instead they had to be ripped out into this hard world. I miss being pregnant; for days after my sons came, I kept touching my stomach unconsciously like I had for months before to feel them move only to be suddenly reminded that they were no longer there. I am told that this is all quite normal given everything that has happened. I try not to let myself languish in these moments, for they don't do any of us any good but like everything else, some days its harder than others.
It is a very strange mixture of happiness and grief when you give birth so very early, an incredible three months early for my sons. Obviously the sheer happiness at seeing your children in the world is unparalleled, but its also coupled with the grief of seeing them struggle with tubes and monitors and all kinds of lifesaving equipment. At the same time I am reminded that it is because of this very technology and the expertise of the amazing NICU staff that my children have a chance at all. Well, that and all of the prayers being said in their name. I know that my sons being born at 28 weeks have already defied the odds and I know that with God's help, they will continue to do so.