Meg and I had a great idea for a date night tonight, away from the NICU. Of course, a huge thunderstorm rolled in and foiled our plans to see a new band and get outside for a while. Instead, we opened a bottle of wine (Meg's first glass in a year), played cards, and watched college football. Do I have an amazingly cool wife or what? We decided that we were going to spend at least one night away from the NICU, though we did see our girls' little baby faces this morning. As much as we enjoyed some time to ourselves--away from the hospital and away from work--we couldn't help but talk about our babies and contemplate, on a couple of occasions, making the quick drive to the hospital. Instead, we took advantage of some of our free time to look through some of the videos we've made over the last couple of weeks and go through some of our pics from the last couple of days.
Also, the last couple of days have been a roller coaster with regards to Isabelle. I wrote a few days ago about the second tube they inserted in to her belly, which immediately relieved the air pressure that was building up inside. Unfortunately, over the last few days, the air re-accumulated and expanded her abdomen to the pre-drain circumference.
Isabelle enjoying some peace and quiet
The scariest part about all of this is that there isn't a predefined treatment plan. It seems to be a lot more of, "Let's try this and see how she responds," which is extremely difficult for me to deal with. I like having a clearly defined plan of action and there just isn't one. Today, Dr. Mak came back to the hospital and replaced and repositioned the drain she had inserted just a couple of days ago.
One of Isabelle's two drainage tubes
She was able to evacuate the newly accumulated air pocket. Now, we're in wait-and-see mode. She did tell us that if the air begins to build again, that she won't insert another drain. At that point, they'll seriously consider more evasive surgery in which they'll open up her abdomen and try to figure out where the leak is along the intestines. Right now, they can't tell if it's one or two small perforations or a larger one as it's something they can't see on the x-ray. If they do have to go in, once they find the perforation, they would need to cut out that part of the intestines and sew the ends together, assuming they're in good enough shape to sew. If not, they have a process that allows the ends to heal both inside and outside the body so they can, eventually, put them back together. We hope it doesn't get to that.
If there's a silver lining to be found it's that the nurses and doctors continue to hear bowel sounds during their exams, which means that her intestines are TRYING to work. If they heard nothing, it would be a sign of something more serious. Her CBC test showed an increase in white blood cells, suggesting that they're may be an infection, but the docs, for now, are thinking that it may be due to the stress from the last several days as all cultures have returned negative.
All we can do for now is pray that, whatever it is, it heals itself before the doctors decide that she needs surgery to make it better. We'll also ask that if you're the praying type, please say a prayer for her as she needs all of the help she can get right now.
On a happier note, Madelyn and Sophia are doing great and are really progressing. They're slowly starting to wean them both off of their high-flow cannulas and are increasing the amount of milk they get at each feeding. Sophia is eating so much food that they're likely to remove her PICC line tonight or tomorrow! Madelyn isn't too far behind and should get her line removed within the next few days, assuming that she continues to increase the volume of her feedings.
I'll be honest, Meg and I are having a difficult time getting excited about Madelyn and Sophia's progress when we know that Isabelle is hurting and isn't able to keep up with her sisters right now. We're trying to stay positive and see the light at the end of the tunnel, but it's so hard when she has so far to go. We don't want to miss the excitement around watching our other girls making progress, I just want my tiny baby to get to a point where she's stable enough that we can turn down our worry-meter for a while.
As they grow, they're starting to look more and more like the babies that everyone is accustomed to and less like preemies. They're not there yet, but they're on their way! See for yourself!
Miss Sophia's film debut for all of the friend and family that want to see what a living, breathing, DeBauche triplet looks and sounds like in real life (turn your volume up)
Sophia proving she's a big girl on the scale
Sophia's beautiful eyes
Enjoy today's moment of bliss (Maddy)