Information Overload!

Happy two-week birthday, Verity! It's amazing to think of all that has happened in two very long, short weeks. As we wrap up Day 15 here in the NICU, I'm finally getting some quiet time to chronicle today's happenings. First, though, a gratuitous shot of our very-much-compatible-with-life baby girl. Ain't she something?!

It's amazing how even a few ounces of weight gain can make a wee one look so much more filled out! As of last night, Verity was 5lbs, 7 oz, up 4 ounces from her birth weight. Tonight, she was 5 lbs, 10oz! Wowza!

Last week we were hearing optimistic ideas about us heading home Monday or Tuesday of this week. That is obviously not happening, but given our circumstances, I am quite all right with staying put a few more days. Here's today's story summed up in a single photo:

Does that make your brain explode? Because part of me wants to walk away rather than have to deal with all of those cords. But the rational part, the part that tells me to take a deep breath because WE CAN DO THIS, reminds me that these machines represent LIFE for Verity. And this afternoon in the NICU was all about the machines.

First, though, we squeezed in some regular ol' family time. Ted brought 6 kids to the NICU in the late morning. (Our older two are with my mother-in-law at a speech and debate tournament this week.) Rhema had a chance to "hold" her baby sister for the first time...stinkin' cute:

I took Arden, our 13yo son, out of the NICU for a surprise milkshake treat so I could spend some one-on-one time with him. I got to tell him personally how much I appreciated hearing various reports about how amazingly helpful he has been with his siblings. He really has a gift with younger children! And since Charis and Tobin have been away so much with their school and church activities, Arden has had to pitch in extra to help out. I love that kid...and yes, I can still call him a kid, even though he's taller than I am and starting to shave...! Oy! And I noticed today that his voice is deeper. What the heck?! When did this happen???!

After we returned to the NICU, I finally got my lunch and had some time to discuss some things with Ted; we hadn't even begun learning about the aforementioned machines, but our heads were already spinning from dealing with other matters. Our pastor joined us in the family lounge for a short visit, having come to the hospital to pray with another family, and it was perfect timing and a much needed chance to talk and pray with him about some joys as well as concerns.

Meanwhile, our case worker had been busy behind the scenes doing paperwork, making phone calls, and setting up training times for us. First up, training with respiratory therapists on how to use two machines that will help us monitor and care for Verity: a pulse oximeter, which will help monitor her heart rate and oxygen saturations (allowing us to sleep more easily at night and monitor her at times when she may not be in the room with us), and an electric suction machine. A bulb syringe should work fine when things are "normal," but in the event Verity aspirates and we need to clear her out so she can breathe, this suction machine will be good to have. We anticipate it will be an "in case of emergency" tool and not something we will use terribly frequently, but after our research and hearing from other T18 parents, we felt it would be important to have at home. Thankfully our doctor was happy to prescribe whatever we felt we needed to take Verity home, and our case worker handled the paperwork for us.

The respiratory training took close to an hour. By time it was over, it was 4pm, and our littles were done. They had been so very good; we kept Seanin and Rhema in the conference room with us and let them color while we listened and asked questions and signed papers. The others were in the family lounge probably watching stupid cartoons. But since Ted had arrived five hours earlier, it had indeed been a long afternoon for them all, so they headed home, leaving me to consult with the doctor and then continue with feeding tube training.

The only real bit of news the doctor gave me was that he didn't want to hurry us out the door, but rather wait until everyone is comfortable that we are truly ready to go home and feel confident taking care of Verity on our own. He is thinking Friday for our discharge, which will give us a good 48 hours or so to practice with our own machines. I might even switch to one of the "rooming in" options tomorrow or Thursday night; rather than being in the NICU, I'd be just across the hall in a hotel type room, where the nurses are just a few feet away, allowing me to "practice" caring for Verity without any oversight unless I ask for help.

So the feeding tube training was me by myself with the nurse...at 4:30pm...and I had not had a nap all day--I listened as well as I could and absorbed a fair amount, I'm sure, but my eyes were starting to cross I was so tired! I do wish Ted could have been there, but he can join us for the 11am feeding tomorrow. I decided to wait to use our own feeding equipment until tomorrow when I can wake up and feel a bit more alert!

Between all the meetings and discussions, not to mention pumping sessions (because let's not forget that every 2.5-3 hours I have to sit and pump!), caring for Verity, and trying to do normal stuff like, oh, go to the bathroom and eat...I headed into the dinner hour feeling extremely exhausted and overwhelmed. Seriously, being Verity's mom is a full-time job. I KNOW there is a learning curve; I KNOW it will get easier after we practice. I fully believe that God allowed me to experience such dramatic feeding difficulties with Zaden and Rhema to help prepare me for this journey. I'd like to think that eventually Verity will be able to nurse, but the truth of the matter is that for the foreseeable future, she can't do that. Simply keeping Verity alive will require intense time, effort, and energy on my part and, to a certain extent, the rest of the family's as well.

But. Lord willing, it will be a season--Verity will grow bigger and stronger; I won't have to pump quite so frequently; maybe she will even be able to nurse. For now, I will do my best to squeeze in as much of this as possible...