Finnian is in the NICU at Children's Hospital. I started typing up a detailed account of what led him there, but my computer froze up and I lost it all and I don't have the energy to start over, so I'll just give the basics. He began spitting up blood yesterday afternoon, and that, along with the fact that he never really nursed despite many efforts to get him to, and he never peed or pooped at all from the time he was born to late yesterday afternoon, we ended up taking him to the ER. They ran a bunch of tests and discovered that he has an intestinal blockage which will require surgery. So he was admitted to the NICU last night and the surgery will take place sometime today, although at this point we don't know when - apparently all depends on when the OR is available and when all the needed staff is on hand. They're anticipating about a 2 hour surgery and that he will be in the hospital for at least 2 weeks. He has to recover from the surgery, during which time he will be fed intravaneously, and then they will gradually try to get him to take nutrition orally, but it will be via bottle. I am trying to pump, but not having much luck so far. I'm worried that the fact that he never nursed well during that first critical 24 hours is affecting my milk coming in. Even if I'm able to pump milk for him, they won't even attempt to let me try to nurse him directly for quite some time, so I don't know, I may never be able to nurse him - he may never take to it.
He has some other issues . . . some signs I guess, that he may have Down Syndrome. We won't know until they do genetic testing on him, which is in the plan.
I am devastated right now. I cried buckets and buckets since last night. This is stuff that happens to other people, you know? I give birth to healthy babies and I nurse them. That's what I do. I never anticipated having a baby at home, part of the goal being to give him a peaceful, loving start in life, only to leave him at the hospital where he will be cut open, and spend the first weeks of his life under bright lights and with tubes and needles and monitors attached to him, with a rotation of nurses caring for him. Leaving him there last night, even knowing that this is what needs to be done so that he will get better, was one of the hardest things I've ever done. He's supposed to be in my arms right now, and I am empty.
I didn't do any of the genetic screenings with this pregnancy, despite being 40 years old. Not that having found out earlier that he has DS (which we don't know he does, he may or may not, but my heart is telling me he probably does) would have changed anything. But I feel like this is what I get for being too confident, for rolling the dice just one more time. Michael didn't want to have any more babies. I needed to have just one more. When I got pregnant, I worried through the first trimester that I would miscarry, that my good fortune with healthy pregnancies was finally going to run out as punishment for tempting fate. But I didn't miscarry, and so I felt confident that I would once again grow a healthy baby just like I had done before. I keep telling myself that there are worse things to be faced with. There are. But I am still crushed right now.
I don't believe in God or prayer. But even so, I'm asking you all to keep us in your thoughts.
***
Michael called Audrey, his sister in L.A., to see if she could stay with the kids so we could be at the hospital. Michael called the hospital first thing in the morning to find out if the surgery had been scheduled and was told that it was scheduled for 9:00 a.m. I headed to the hospital while Michael waited at home for Audrey to arrive so he could meet me there. Sue met me at the hospital so I wouldn’t be alone until Michael got there.
I met with the surgeon prior to the surgery and he and the anesthesiologist explained the procedure to me and what to expect. I was also told that an echocardiogram had revealed a small hole in Finn’s heart. I already know that heart issues are common with DS. However, what they told me is that the most common condition associated with DS is some kind of canal or space between the chambers . . . I’m really not clear on this. But whatever it is, Finn does NOT have that, so that’s good news. They’re not overly concerned about the hole, but do want to keep an eye on it.
Before the surgery -
Posted to the pregnancy/birth board I belong to:
Finnian went into surgery at about 11:00 a.m. and it was about 2 1/2 hours long. The surgery went well. The official diagnosis for the intestinal issue was Duodenal Atresia - basically it was a disconnect in his upper intestine - it stopped, or dead-ended, and then started up again elsewhere, if that makes sense. So anyway, they went in and connected those two ends, and while they were in there they removed his appendix because, as it was explained to us, after shifting his bowels as they did for the reconnect, his appendix no longer sat in its usual location, so if he were to ever develop appendicitis, it might be misdiagnosed because he wouldn't have symptoms in the usual location.
I'm probably giving way too much info here . . . I'm beyond exhausted and feeling very scattered and emotional.
Anyway, so the surgery went well. He has an incision on his abdomen that is probably 3 inches long (which is of course stitched closed now). The anesthesiologist had anticipated keeping him intubated and on a ventilator through the rest of today and possibly into tomorrow, but Finn did so well that they were able to take him off the breathing tube right after surgery and he has been breathing just fine on his own.Only time will tell how quickly he recovers from the surgery.
They have a pump station in the NICU which I used several times today, and I also am renting a hospital grade pump to use at home. So far I'm only getting a bit of colostrum, but I am hopeful that my milk will come in soon and I'll be able to provide him with breastmilk. It is still just breaking my heart that I can't nurse him, at least for the time being.
A geneticist met with us today, and on visual examination, she seemed pretty certain that he does have Down Syndrome. Blood was drawn to do a genetic workup, and we won't have the official results until Thursday afternoon, but she referred to it as "confirmation." So I am trying very hard to digest this and come to terms with it. I know that DS children have every chance to lead full, happy lives, but how can I not be devastated that he won't have the life I had envisioned for him? I can't help but think of the health problems that are typically associated with DS, and how his developmental delays will impact our family. There are so many days that I barely feel qualified to care for my "average" children . . . how am I going to be a good mother to a child with special needs? What hurts the most is knowing that this is a lifelong issue, and everyone who comes into contact with him will see him and treat him as "different." It's not fair. And I can't help but feel like I did this. I mean, rationally, I know I didn't cause him to have these issues, but it was I who chose to conceive him and now he has to live his life with these issues. How can I not have an overwhelming sense of guilt?
I know that what I need to do is to take the whole thing one day at a time and try to stop looking so far ahead. There is no way to predict how this will play out, and I'm only going to make myself and my whole family miserable and stressed out by worrying about what might be.
I sent an email out this morning to a few RL friends, just to let them know what is going on, and I am astounded by the response - which I never expected. My MOMS Club has organized to have meals brought to us for the next 3 weeks. The board of my MOMS Club took a special vote this morning, apparently, to use some money in the budget to pay for about 30 hours of childcare for us by way of a nanny that a friend uses. People are calling and emailing offering food, help with the other kids, errand running, everything. I am speechless with gratitude.
I am still so weak and exhausted and sore, and I spent the day walking hallways from one department of the hospital to another. I’ve come close to fainting a number of times. Everyone at the hospital is so kind. They bring me juice and make me sit down whenever I can. When we were in the recovery room with Finn, the nurse had an orderly bring a wheelchair so I wouldn’t have to walk all the way back to the NICU when Finn was moved.
I walk around with a ragdoll the NICU provided me with, stuffed into my bra for Finn. I sleep with it as well. I hope when he is able to have it, my scent will help him remember his mommy when I can’t be there with him. I hope it makes him somehow feel how very much I love him.
Post-op:
1 comment:
He's so tiny and perfect. What a beautiful boy and how scary for you all to be dealing with a surgery so soon.
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