Week 39

Alex listening intently to Daddy.

oh really Daddy? You’ve told that one already.

Maybe crossing my eyes will get his attention…..

Nicholas thinking “Really? Your finally going to change my diaper?”

Yeah!!!!!

Umm…..anyone have an extra blanket? Think I might need at least one more….Nicholas

Alex….ummm a little help over here.

WEEK 39

This has been another amazing week!!!! Both boys continue to make significant gains.

After being stuck for weeks at the same oxygen rate, We were really excited when Nicholas went down to 3 liters last week. But he decided to really surprise us and make THREE more weans on his oxygen this week alone and is down to a whopping 1.5 liters. They say the last little bit is the hardest to come off of so progress will certainly slow from here but we are just thrilled with how far he’s come! Alex continues to do fabulous at .5 liters and has only been needing 22-24% oxygen. When he comes down to needing only 21% consistently, they will trial him off of oxygen completely!!!

You want more amazing? Ok. Alex is on “full” feeds. For his body weight that means 13 cc’s per hour continuous feeding around the clock with a tube (ND) that goes in his intestines. We are told the next step is offering him about 5cc’s from a bottle to see how he does. If he tolerates this okay, we can try that at each feeding time and slowly increase how much he gets from the bottle and decrease the amount that goes into his feeding tube. We are ecstatic! They warn us that this part can be extremely slow go. He hasn’t had anything in his stomach, since we’ve been feeding him directly into his intestine so he may have a hard time tolerating this at first. He also may tire very quickly doing this himself. They will have to put one more tube (NG) in his belly to check “residuals” as we do this to see how much he is able to process the feedings and will basically tell us how fast or slow to pace things. We are nervous, this is a pretty big deal (along with breathing, being able to eat is right up there). We think this will be started in the next couple of days and remain very hopeful. They tell us one concern for babies born as little as ours is that all of these weeks (actually almost three months now) that they have not been able to "normally feed" makes it actually harder for kids to get started. Many kids will have aversions to bottles because they have only associated their mouths mostly for tubes, frequent suctioning, medical tests, etc and not for eating. This is one of the reasons I guess that they have encouraged pacifiers, so its the one thing that they can hopefully make new associations for that are not unpleasant.

Nicholas has been at “full” feeds most of this week with the tube going into his stomach (NG). They check his residuals every four hours. Typically you are allowed up to one hours worth of residuals (think of it as leftovers—formula that has not been digested or passed through yet). That means he can have up to 13cc’s each check. He has been doing fairly well but his tummy is definitely having trouble processing all of this. Every day he has a couple of very large residuals (all the way up to 21cc’s) along with the “acceptable” amounts. In the past, large residuals meant stopping the feeding, getting an x-ray to make sure that there is not a blockage or something ominous going on, etc. Luckily they have gotten to know our boys by now and usually now someone just comes over to take a look at his belly, measure his girth and listen for bowel sounds and then its back at it.

Its a little unclear when Nicholas will be able to start trying from a bottle, since his feedings are already going into his stomach. It sounds like they want less extreme residuals before we attempt anything new so we will see. For both boys, another task before them is to start condensing their feeding times at some point. Right now they are both getting a little bit of feeding but its constant over 24 hours. This is supposed to help them tolerate feedings easier. Another step will be to give the same volume but over shorter periods of time so eventually to get them getting in their calories in a much smaller amount of time and getting them on an every three hour schedule (eventually). It seems like light years away at this point for them to be able to accomplish all of this. Throw a little reflux on top of this (Nicholas has been diagnosed with this and basically gags and chokes these days on his binky or even nothing at all so I’m extremely nervous about how he will manage taking a bottle) but I know we will eventually get there.

In other news, Alex had a recent kidney scan and his kidney reflux has went from a stage 4 to stage 1. This is wonderful news. He will continue to need monitoring with this and will remain on antibiotics as a preventative to urinary and bladder infections but this is GREAT news. He is no longer needing cathing (for now). We know that children with spina bifida often need cathing at some point but we are thankful that its one less thing we have to worry about for right now.

They have also been watching Alex’s head circumference. Its one indication of how well the temporary shunt is working. The pocket of fluid on the side of his head has grown shockingly large over the last week or so and neurosurgery has been over to assess several times. They will be back tomorrow to evaluate again but it looks like he will likely need a new shunt soon. We dread one more surgery but we’ve known all along its been coming so if it has to happen, lets just get on with it. We are hoping he is now big enough to have the VP shunt which will drain the excess fluid through a tube threaded into his belly, instead of the side of his head. We will wait to hear more this week.

It is a beautiful thing not to have had those stomach dropping falls and huge backward steps these last several weeks. Even if we are standing still, it is a very GOOD thing because that means no new obstacles have been put in the way. Mark and I fully appreciate these days, we do. Most of the time one or the other of us will remember to look back at where we started from to see just how far we’ve gotten. Which is a good thing because that's usually when the other one is feeling a little beaten up by this journey and thinking how much longer do we have to BE here, how much longer until we can just take them home?

Its been 78 days today, our lives in the NICU. The crazy place where you’ve been dropped to learn a whole new language, a crash course education no one ever wants to take, alarms that are constantly sounding signaling a baby’s oxygen level is too low, or a heart rate has dropped, or an equally loud alarm just stating a medication is done infusing or the continuous feeding tube needs more formula. A place where you sit in hard chairs peering over at your little ones, sometimes waiting hours before you can participate in their care, needing permission to pick up your own children to hold and comfort them. A place where on a regular basis you hear doctors and nurses giving parents news about a new diagnosis, a new worry, discussing another test, abnormal lab work and when you see them coming, you just pray that they are not coming to talk to you (then promptly feel terrible that these other parents, your new friends are having to go through this). A place where babies are watched so closely (which is a wonderful thing) but also means that even when things are going good, you are always told in detail what to look for when something might be a concern and ofcourse…..you are hyper vigilant and are always seeing these potential signs.

Mark and I have not missed one day out of the 78 days of our boys lives at the NICU, in addition to the two weeks I was in the hospital beforehand. We know the routines, the language, equipment, many of the doctors, nurses, even the parking attendants. We try to soak up everything we can in learning about our boys, their health issues, what they might need when they come home. We are getting to know their little personalities, and trying to have them get to know us as someone different than one of their nurses giving care. I think the emotional and physical fatigue is starting to catch up with us. For much of this journey, it was the adrenaline really helping to keep us going. I think as long as our babies are in the hospital, there will always be a little bit of adrenaline but hopefully not to the extent that we first experienced. I honestly don’t know how my husband is keeping up. My only job right now is to spend time with the boys, asking questions, advocating and trying to keep up the mundane tasks of home, bills, hospital paperwork, etc. He gets up early to get into work, works full days, and then rushes to the hospital every night to spend time with the boys and me, then comes home and tries to keep the energy up to continue his remodeling of the basement before he crashes and gets up the next day to do it all again. It is because of his hard work that I get to be with my boys all day and I am soooo thankful.

I know someday my days will be harder, when I can bring both my babies home. I met up with our newest and dearest friends from the NICU last week. They have been home with their babies for about a week and a half and everyone is doing good, exhausted with new babies at home, but good. I look at them like I’m looking through a picture window in my hopefully near future. I know I will never imagine the pure exhaustion of having to be up around the clock with a new baby (and two at that) until I have to do it myself but I still can not wait for the day. I am absolutely positive that I will freak out when one of them is crying and I can’t figure out why, and not have the expertise of a nurse sitting right there to reassure me that they are fine but I still can not wait. I am sure that I will miss the days where I could just leave the house or sleep whenever I wanted without a second thought but I will then have them with me in our home and I just can not wait for the day!!!! (I’m sure some day in the future I'll be frazzled, covered in spit up, when I’m handing off one of the boys to whomever just happens to come to the door just so I can go get a shower for the first time in days, someone will remind me of the days I couldn’t wait for this…..and I will smile).