2 Weeks!

               Today I would have been 36 weeks along if I were still pregnant.  Instead, I am blessed to celebrate my miracle baby’s 2^nd week of life!  It’s been a good week, for the most part, with just a few rough patches at the end of it. 

                Last Saturday, we met with the neonatologist and neurosurgeon to discuss the details of where and when to do Flint’s shunt surgery.  There are no pediatric neurosurgeons where we live, so we had already planned to have Dr. Weprin, who we met with in Dallas, do the surgery once Flint was the right size.  However, the neonatologist had spoken with the neurosurgeon here (Dr. Errington) and they both felt like there was no need to make us go to Dallas, unless we were more comfortable with that option.  Dr. Errington told us he hadn’t done many shunt surgeries on kids, but he felt comfortable enough to do it on Flint once Flint hit 5 kilograms (11 pounds).  Since Flint’s swelling is increasing, he suggested doing a temporary procedure where they put a reservoir in Flint’s head, and then every couple of days they use a needle to extract any extra fluid that has accumulated.  This would just buy us time until Flint was big enough for the permanent shunt procedure.  We really weren’t sure if this was the best option, so Dr. Errington told us he would talk with Dr. Weprin in Dallas to see what he recommended. 

                The next day, Dr. Errington told us he’d had a great conversation with Dr. Weprin about Flint’s surgery, and that he had learned a lot!  Dr. Weprin told him that he does shunt surgeries at only 2 kilograms (about 4 ½ pounds), that therefore there’s really no need for the temporary reservoir surgery, and that the shunt Dr. Errington always puts in is kind of outdated and just causes too many problems.  Having received this new knowledge, Dr. Errington then shared with us that he was totally comfortable doing the surgery on Flint when he hit 2 kilos.  When he said this, my thought was “Huh?  Did he just say what I think he said?  Did he really just say that he was comfortable doing a surgery on my son’s BRAIN when he has NEVER done it on someone as small as him, and he has never used the kind of shunt the pediatric neurosurgeon suggests using?”  While he may be fine giving it a shot, I assure you that Brock and I are NOT fine with him experimenting on Flint!  We actually really like this doctor.  He is humble and has always been totally fine with us sticking with our Dallas plans, but we were really kind of shocked that he was still offering to do the surgery, given all the new information he learned from the guy who does these surgeries all the time on babies. 

                Needless to say, we decided to stick with our Dallas plans, even though it will mean a life-flight that our insurance probably won’t cover, my mom having to come up to help with kids while we’re gone, and the hassles associated with traveling to Dallas.  However, we feel SO much more comfortable putting Flint in the hands of the doctor who does these procedures on a regular basis.  So at this point, we are just waiting for Flint to get a little more chub on him.  As of now, he weighs 1.881 kilos and he gains about 50 grams a day.  At this rate, he should hit the 2 kilo mark by Monday or Tuesday, so we should be able to go to Dallas and be back before this week is over.  This is a really good thing, because his poor little head has been swelling a lot over the last couple of days.  The nurses have been telling us that the increased pressure in his brain is probably contributing to the increased amount of “Bradys” that he has experienced lately.  A normal heart-rate for a baby is anywhere from 165 to 199.  When Flint gets mad, it goes up over 200 and his monitors start beeping, but it’s not a big deal and it quickly goes back down to the normal range.  A Brady though, is the opposite.  This occurs when his heart-rate drops down to under 80.  When this happens, he stops breathing and his skin gets ashy looking because his oxygen levels are too low.  The monitors really go crazy at this point, but after a little bit he pulls his heart-rate back up and starts breathing normally again.   Bradys freak me out, BUT they are very normal in preemies.  However, for a few days there he was having way more than normal.  I’m not sure how  it all relates, but the fact that his head is swelling and the amount of Bradys he’s had has increased means it’s a really good thing that he’s almost big enough for the surgery, because he needs it! I will be terrified when they actually perform this surgery on my son, but I will be relieved when it’s over and we can check one more item of worry off our list!

                In addition to gaining weight, another thing Flint is working on is learning to eat.  The nurses started bottle-feeding him this week, and he is slowly getting the hang of it.  He has to learn how to coordinate sucking, swallowing, and breathing, plus he’s got to get strong enough so he can finish the whole feeding in half an hour.  Any more than that, and he burns too many calories.  It’s kind of a tricky process at this age, plus it really wears him out!  It is really cute to watch him work so hard to eat, and he gets so mad when he has to burp.  It may sound weird, but it makes me so happy that I can tell from the sounds he makes that he needs to burp.  Because we are so limited in our interactions with him, there are many things I still don’t know about Flint.  But I’ve been around during his feedings enough to recognize his way of telling me he’s getting a little too gassy.  Oh, the things I’ve taken for granted with my first four kids!

                Now that he can eat without gagging himself, Brock and I have finally gotten a few chances to help him learn to bottle-feed.  He’s still learning the whole process, but he’s good enough that we get to help him learn.  I also got to give him 2 baths this week.  He LOVES his baths!  Of course, it helps that there’s a heating lamp right above the sink so he stays toasty warm, but it is so cute to watch how relaxed he gets in that setting. 

Feeding him and giving him a bath have been much-needed, special experiences!  I cannot describe how wonderful it is to get to ACT like his mom, instead of just BE his mom.  It is hard to leave him at the hospital each day, and I miss him like crazy.  A couple of times this week, he’s cried while I’ve been there and it’s made me so mad that I can’t just take care of him like I can my other kids.   A week ago, I felt totally fine knowing we had one week down and only 5 more to go.  I remember thinking “I can do this.  It will be a piece of cake because we’re already 1/6^th of the way through”.  My perspective on that has changed a little this week.  I am getting frustrated with having to leave him at the hospital and can’t believe that we are ONLY 1/3^rd of the way through.  I know that leaving him in the NICU is going to get REALLY old and REALLY frustrating before we’re all done there.  I’ve cried a few times this week as I’ve been frustrated with the long wait we still have before we get to bring him home. 

As for my other kids, they are doing fairly well, though we have certainly had an increase of melt-downs this week.  They are stressed out with the change of schedule and with how often Mom and Dad aren’t around.  We’re trying to keep things as normal as possible for them, but it is still a stressful time, and they can feel it.  As it gets closer to the time when Flint can come home, we will be needed more at the hospital, especially when it is time for Flint to learn how to nurse.  I’m hoping we can ALL learn patience through this whole thing and come out better and stronger for it!

Before I end this update, I wanted to share a text message a friend sent to me:  “When you post pics of Flint it gives me encouragement on my hard days to keep pushing through.  If he hasn’t blessed anyone else he at least does this for me.”  I was so touched by this sweet message.  It brought me great joy as I reflected on the many ways this strong little boy has blessed people’s lives.   I know I have learned an infinite amount of lessons through him, and I’m so glad that Heavenly Father is using this sweet little boy to inspire others and to show the great power He has to work miracles.  Tender mercies abound!