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Shannon's twin pregnancy journal

After Birth: The NICU Experience
September 2

Well, we've somehow managed to survive our first few weeks of preemie-hood. Before I get into that, let me (briefly) catch you up from where we left off . . .

While Peter was on his way to the hospital the day the babies were born, he called our son, David, to meet him and pick up his younger brother and sister. As David and his friend, Jon, planned to take Alex camping, Dave asked if he could take Emily and Graham along as well. I will always be amazed that my sixteen-year-old son took three of his brothers and sisters camping for three days! They returned home on Monday (August 17), just about an hour before my surprise arrival. I walked in on all the kids watching TV (what else would they be doing after three days away from civilization?). When I tickled Alex' head, he turned and shrieked, "MOM!" Then he burst into tears. I was afraid all of the kids' hugging was going to tear open my incision. What a great homecoming it was!

Now, back to the NICU experience . . . Peter and I have learned that there are many things parents of babies in the NICU become obsessed with. Some of these things include: heart rates, respiratory rates, blood oxygen saturation, bilirubin levels, and the little pink card that hangs from the isolette on which daily weights are recorded. Babies in the NICU exchange an umbilical cord for many other cords, each of which lead to a monitor of some type or another. We check all of these monitors over and over again, from the time we arrive until the time we leave. We also check the weight card and nurses notes. It's hard to comprehend determining how your baby/babies are doing by studying monitors and notes unless you've been there. We're becoming such good little NICU parents. And Kai and Abi are such good little NICU babies.

Kai was on a ventilator only until Sunday (August 16) night when he forcefully pulled it out. The nurses placed him on another type of assisted breathing and he pulled THAT out. Finally, they tried supplemental oxygen through a nasal canula and he did just fine. Our boy knows what he wants and knows how to get it! Because of high bilirubin levels, he has been "under the lights" several times (as has Abi). Blood cultures showed no sign of the infection that brought about his early delivery. As a precaution, he received IV antibiotics for several days before he was started on breastmilk via NG tube (a tube through his nostril that goes into his stomach). He tolerated his feedings well, and they were continually increased until he picked up a nasty little intestinal virus over this past weekend. His feedings were discontinued for several days to give his belly a rest. As of today, he is back on feedings and has regained some of the weight he had gained and lost. He now weighs 3 pounds, 9 1/2 ounces, just 1/4 ounce over his birth weight. It's going to be a LOOOOOONG haul to get to the 4 1/2 pounds he needs to be in order to come home. At least we've made one giant step toward that goal . . . Kai's oxygen was removed on Monday, and he's doing great without it. YAY!

Abi has had her share of ups and downs as well. Although she was well enough to start NG tube feedings of breastmilk before Kai did, she has had more problems. It started with her belly being slightly distended just once, and the nurses were "keeping a close eye on it." Then she began having episodes where her heart rate slowed, called bradycardia (better known as bradys, in NICU-speak). Her nurses thought her bradys were caused from reflux, but the doctor put her on supplemental oxygen via nasal canula to see if it would help. The oxygen didn't seem to make much difference, and it was discontinued this week. Finally, she was placed on Zantac to reduce acid in her tummy. We didn't get much time to see how that worked out before she was hit with the intestinal virus that Kai would come down with a day later. Her feedings were stopped and here it is, a few days later and she still receives only IV feedings. She has another abdominal x-ray scheduled for tomorrow morning and if all looks well, she will start feedings again. Her weight, after small gains and losses, is now back at 3 pounds, 6 1/4 ounces.

As for me, I thought those five weeks in the hospital before Kai and Abi's birth were the most difficult experience of my life. I was wrong. Having my babies in the NICU an hour away from me is the hardest thing I can imagine. I try to balance spending time with the kids at home, who missed and needed me for all that time and spending time with my babies at the hospital. It's been hard trying to be in two places at once, especially while recovering from a c-section. In addition to everything else, there's this breastfeeding thing. I've never had to start out breastfeeding by using a pump, and I'm here to tell you it's not fun! The first few days, there's not much there but you don't realize how very little there actually is when it's going directly into the baby. I pumped and pumped only to get 5 cc's of fluid. Abi started out on 8 cc's per feeding and it broke my heart to watch the nurse add 3 cc's of formula to my milk. Now I have plenty of milk, so much that I've been asked not to bring any more to the hospital because I was filling up their freezer! My freezer started filling up, so I've been reduced to using the "pump and dump" method in order to maintain my milk for the day when my babies might actually be able to take it directly from me. Man, I HATE that breast pump!

There are so many days when I just don't think I can handle any more. I never knew there were so many tears to be cried. I find myself tearing up anytime, anywhere . . . McDonald's drive-thru, at bedtime, when I get up, as I drive to and from the hospital, and of course in the NICU. Some days, I dread going into the NICU because I'm afraid to hear the good news/bad news. I keep reminding myself that things could be so much worse. No matter how bad it might seem to be going with our babies, it's never so bad that someone else isn't going through something much worse. Somehow it doesn't bring me much comfort. Other preemie parents tell me this is normal and I just have to get used to it. This is normal? None of this is NORMAL! I guess "normal" will never be quite the same for us again.

Peter has been so wonderful through out all of this. During my five-week stay, there was only one day that he didn't come down to spend time with me and my mother was there that day. He wanted me home so badly and now that I am, he's still unable to sleep a full night. He goes down to see the babies nearly every night after work, sometimes with me but usually alone. When he comes home, he reports on his visit and he always seems so positive and optimistic. I know how he worries about the babies, but I couldn't understand how he manages to hold up so well. The other night, I asked him about it. "I hold it in," he replied. His answer made me very sad. I think that he tries to be so strong for me. He is always there to hold me when I cry. I cry so much that it's reached a point where I try to hide my tears from him just so that he doesn't feel he has to hold me up. At least I can let it out and let it go. He carries so much around with him. Somehow, I need to find a way to convince him it's okay if he needs to lean on me for awhile. And I have to be strong enough to be there for him when he does.

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