Drastic Changes!!!!

Well for the most part the past few weeks have been wonderful! As you've seen from the pictures Jakey has grown a ton! Well half a ton of grams to be exact in a relatively short period of time causing us to be extremely excited! But all of that suddenly came crashing down Monday when his stats plummeted in a matter of hours. For those of you who know NICU lingo he was on high flow at 25% FIO2 oxygen with an SPO2 of 90! Which is basically PERFECT! Then suddenly skyrocketing to 85% oxygen with an SPO2 of 80% (horrible). 


The doctors quickly put him back on CPAP which he HATES!!! But he struggled throughout the night and by morning they decided he was even worse off than they thought so he got switched to IMV CPAP (which he HATES even MORE than the normal CPAP). Well after about a half hour Jake had had enough and he let everyone know about it. He started to scream his head off and when that didn't work he decided to hold his breath!!! Well because he doesn't have any reserve in his little tiny body, his heart all but stopped and they had to perform a minute of rescue breathing to get his heart and lungs working again. 


After this horrible episode the Doctors listened to Jake and put him back on CPAP but this didn't last long. After all day of struggling, Jake had an ecocardoigram (a heart ultrasound). From the first intense ultrasound we learned that Jake could have aspirated (swallowed throw-up) into his lungs at some point causing his pulmonary artery to restrict which then caused his oxygen needs to climb. This caused his heart to start pumping at twice the speed that it is supposed to, and when that wasn't working his heart actually started to enlarge itself. Jake was having heart failure and was very very close to having a heart attack or stroke! To stop this from happening he was immediately put back on the ventilators and given a drug called Nitric Oxide. This gas opened up his lungs and arteries and within minutes there was a major improvement on his stats. 


But there were lingering questions from the first ultrasound that needed to be answered. So today a new ultrasound was performed. But since Jake is such a wiggly little stinker (during the first test Jake was able to pull out his own IV's and almost his vent tube) for this ultrasound they decided to give him a medication that temporarily paralyzes him. It isn't dangerous, it just allows the doctors to do what they need to do with the least amount of interference and help from Jakey! But what the doctors found is a bit troubling. His lungs have Pulmonary Hypertension! This is super scary to me because who knows how this will effect what kind of life he will have. The Dr.'s have assured me that there is medication for this, and that most likely he will grow out of it, and that he will most likely be able to play sports with his friends, but they can never say it 100%! They do think however that this is a better reason for his lung issues then the aspiration. 


They also found another huge issue. His lung didn't form right. Everybody is supposed to have 4 arteries that come out of the lung and go straight to the heart. Well 3 of Jake's are perfect but the 4th artery decided to go it's own way and connect to some random vein that goes straight back into the lung. Therefore even on Jake's best day only 75% of the waste get's cleaned out. Now on a normal person this wouldn't cause anything to worry about... in fact it is more common in people than you would ever believe. But with Jake being 400 grams at birth and having chronic lung disease this is somewhat serious. 


So today after all this that we learned from the ecocardiogram, there was a point that we thought we were being transported up to Primary's for sure but after hours of waiting and praying (and a bit of crying and meltdowns in the NICU) we learned that the lung specialist up at Primary's wants to do the tests on Jake's pulmonary hypertension after he has fully recovered from all of this! This was a huge relief because he said we could combine his hernia surgery stay with the lung stay so Jakey wont be up there on two different occasions! But there are risks. To find out what medication will work for his hypertension the Dr will actually thread a catheter up into the lung and test medications and get an instant reaction from his lung and blood pressure. But anytime the lung is messed with it is scary and catheters alone are scary so AAAAAHHHHH! That's what I say. 


And with the hernias... try to imagine stuffing a full sized watermelon into your stomach and then try to breathe! That's what he is up against!


He is such a trooper! I could never go through what he is going through with such flying colors as he does. I am sitting in the chair all day doing nothing but crying and I don't have 11 tubes and IV's coming off of me. I have nothing to complain about, (but maybe I can keep complaining for the both of us!) Thank you Ali, Heather and Pam and everyone else in the NICU for getting me through today! I really don't know what I would do without all of you! I love you all!!!! 


Another day down, it feels like infinity to go still! Hopefully tomorrow will be better!