This is a great day!!!!
Jake is off the Jet Life Support machine!!! Up until now, this machine has essentially been doing all the breathing for Jake so that he wouldn’t have to breathe on his own, but now he is on the Drager Life Support which is a less invasive machine that allows Jake to do all of his own breathing… but if he misses a breath or takes too long to breathe the machine will give him a breath. We tried to put him on this new machine last week and he just wasn’t able to convert his co2 levels on his own so we had to go back on the Jet but hopefully not again!!!
The best thing about being off the jet is that Rory and I get to hold Jake once a day every day!!! And today was my turn. The new machine that he is on is flexible and unhooks from him, so that is why it is easier to hold him out of his incubator. The weirdest sight today was when they picked Jake up today to hand him to me they were able to unhook him from all of his tubes and bring him over and it brought me to tears to see him free from every wire! It was a shock to see him that way but it showed me that the end of all of this is closer than it seems.
I got to cradle-hold him for the first time and he was awake the whole time!!! We just sat and looked at each other. I tried to sing some songs to him, and I think he liked it but I know he LOVES it when Rory sings to him. It was great to get to hold him today because with it landing on the weekend Cayden and Brookie were able to be in there so we have officially taken our first family picture as a family of 5! Cayden and Brooke were really patient with me as I had the poor doctors take multiple pictures off of every camera I had available. And luckily I did because after I deleted all the blurry pics and the ones where Cayden isn’t looking in the right direction we only had a couple left to choose from. Thankfully Jake was a perfect angel through the photo shoot!
Jake is also getting big enough to dress up now. I have to thank Merri Lynn for all the cute clothes she has made for him. It is always fun to pick out his outfit for the day and match it to his blankets. The nurse’s laugh when I tell them I want the blankets to match, but Jake just has to get used to things like that, I can be a bit crazy about organization and matching. Ashley was able to get a real onesie on Jake the other day by pulling it up over his feet and body rather than down over his head. He looked so cute! It was a preemie size from carters and it was still way too big for him but it made him look like a real baby. It covered up his monitors on his tummy and covered his scars and for a second I kind of forgot he has all of them. Even though he is small, he is really starting to look so much better, and more like a real newborn baby.
We can now see that he has a dimple in his chin. We also can grab his arms and not feel his bones anymore. His ears still don’t have any cartilage in them so they still lay flat against his head but they don’t look as big as they did 8 weeks ago. His feet look like little ski’s. He better beat the odds and grow up to be really tall or else he will have extremely disproportionate feet to his body. He has always had nails but they are starting to grow now, and he has a really fuzzy head of blonde hair. For a while his hair was dyed yellow on one side because of the brown ammonia stuff they clean his head with before placing an IV in his head but that has now rubbed out. His Hernia’s are humongous!!! Bigger than any of the dr.’s have seen on a baby this small. We are hoping to get them fixed in July!
Jake is now moving his body more intentionally. He used to swing his arms randomly in every direction but now he will focus on his tube and then reach for it. Or he will grab your finger on purpose. It is so neat to see the difference in his actions. He definitely hates his breathing and feeding tubes. Since day one he has fought to get those out of his body… the problem now is that he is getting stronger and almost strong enough to pull them out, in fact last week he was able to pull his OJ tube out 4 centimeters which is a significant amount. Roxanne had to reposition it and take x-rays to see if they got it back in the right spot.
Jake is a miracle baby! He is such a blessing in our lives and I just can’t wait to show him off to the outside world one day. All of his pictures can’t ever do it justice of just how special he is!
