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!
He's about the size of a dollar bill
Thursday, July 28, 2011
Sunday, July 10, 2011
1650 grams... almost quadruple his birth weight!
Jake is changing so much now every day. He is now 3 pounds-11 ounces and cuter than ever!!! He is becoming more and more baby-like every single moment. So much has changed over the past 2 weeks I thought I would quickly share it with everyone!
1. He now opens his eyes all the way and looks around the room as if he is checking it all out. He has good eye check-ups and bad eye check-ups still. Even after his laser eye surgery he isn't out of the woods with his eyes. They ate constantly watching the blood vessels in his eyes to make sure they grow where the doctors want them to grow. But he is definitely making eye contact with us and seems excited to see us when we walk up to his crib! It's as if he knows that whenever we show up he will get picked up!
2. Going with the last one he is starting to recognize things and us. We can tell that he loves it when Rory and I get there because he sees us and then starts flailing his arms around and sometimes he forgets to breath he get's so excited. His eyes get enormous.
3. He also loves his new crib and mobile. The mobile has wild colors with weird looking animals on it that spin around and Jake just lays there and watches it go around and around.
4. He also has his boppy pillow in his crib now that they can prop him up on so he can see people walk around as he's awake. Jake loves this. He is very inquisitive and likes to be a part of everything. His crib is right by the nurses restroom so everyone always makes sure to stop and talk to Jake on their way in. They have talked about moving him to a quieter location but I wonder if he would get bored anywhere else.
5. Jake has mastered the art of sucking on a binky even with 2 big tubes sticking out of his mouth. It amazes me. He has now started receiving 1 ml of milk through a syringe every 3 hours. This helps him learn how to swallow and it also wets his throat a bit. The Anderson tube is still sucking out everything in his tummy but the feeding tube that he has bypassing his tummy is now giving him 10 ml's per hour which turns into 8 ounces of hind milk a day.
6. Jakey is receiving less and less medical intervention each day. The doctors monitor every single thing about him and as he gets older his body is starting to function better and better on it's own.
7. Jake is also starting to control his body motions. He can turn his head all the way from one side to another and can also push his head away from me as we're cuddling. His neck muscles are getting stronger and stronger. He is starting to have this habit of pulling out his feeding tube and Anderson tube every day which is NOT a good thing. But it is kind of encouraging to me that he realizes that he doesn't like the tubes there and he wants them out. The problem is that the nurses are running out of ways to keep the tubes down his throat. He is finding ways to get the tubes out no matter what technique they use to put them in.
8. He is also reaching out to hold our fingers and this toy that I bought him. I am so excited when i see him interacting with things. My worry from the beginning was that Jake wouldn't be a normal baby, and that he would have everlasting problems that would cause him to be miserable his whole life. But I am getting more and more hopeful that he could be very normal.
9. Jake is 2 more steps away from just being on oxygen. Right now he is on oxygen that his hooked up to a humidifier. It stinks because sometimes if we move him before emptying out the condensation we flood water down Jake's nose and then his heart rate drops and it really upsets him. So I cant wait to get rid of the water portion!
10. Jake CRIES!!! and it sounds sooo good. Sometimes I wait to put the binky in his mouth because his cry sounds so good to me. I like that there are things that make Jakey really really mad! That means that his brain is developing right. It's a really good thing that he knows what he likes and doesn't like.
We think we're about 2 weeks away from Jake's move to Primary's. That is going to be a huge change for our little routine that we have mastered over the past 3.5 months. But we know that when this surgery is over we will be able to start the long recovery and that will lead us closer to bringing Jakey home. I know September and October feel like a long way away but to me they are coming a lot faster then I ever thought they would.
1. He now opens his eyes all the way and looks around the room as if he is checking it all out. He has good eye check-ups and bad eye check-ups still. Even after his laser eye surgery he isn't out of the woods with his eyes. They ate constantly watching the blood vessels in his eyes to make sure they grow where the doctors want them to grow. But he is definitely making eye contact with us and seems excited to see us when we walk up to his crib! It's as if he knows that whenever we show up he will get picked up!
2. Going with the last one he is starting to recognize things and us. We can tell that he loves it when Rory and I get there because he sees us and then starts flailing his arms around and sometimes he forgets to breath he get's so excited. His eyes get enormous.
3. He also loves his new crib and mobile. The mobile has wild colors with weird looking animals on it that spin around and Jake just lays there and watches it go around and around.
4. He also has his boppy pillow in his crib now that they can prop him up on so he can see people walk around as he's awake. Jake loves this. He is very inquisitive and likes to be a part of everything. His crib is right by the nurses restroom so everyone always makes sure to stop and talk to Jake on their way in. They have talked about moving him to a quieter location but I wonder if he would get bored anywhere else.
5. Jake has mastered the art of sucking on a binky even with 2 big tubes sticking out of his mouth. It amazes me. He has now started receiving 1 ml of milk through a syringe every 3 hours. This helps him learn how to swallow and it also wets his throat a bit. The Anderson tube is still sucking out everything in his tummy but the feeding tube that he has bypassing his tummy is now giving him 10 ml's per hour which turns into 8 ounces of hind milk a day.
6. Jakey is receiving less and less medical intervention each day. The doctors monitor every single thing about him and as he gets older his body is starting to function better and better on it's own.
7. Jake is also starting to control his body motions. He can turn his head all the way from one side to another and can also push his head away from me as we're cuddling. His neck muscles are getting stronger and stronger. He is starting to have this habit of pulling out his feeding tube and Anderson tube every day which is NOT a good thing. But it is kind of encouraging to me that he realizes that he doesn't like the tubes there and he wants them out. The problem is that the nurses are running out of ways to keep the tubes down his throat. He is finding ways to get the tubes out no matter what technique they use to put them in.
8. He is also reaching out to hold our fingers and this toy that I bought him. I am so excited when i see him interacting with things. My worry from the beginning was that Jake wouldn't be a normal baby, and that he would have everlasting problems that would cause him to be miserable his whole life. But I am getting more and more hopeful that he could be very normal.
9. Jake is 2 more steps away from just being on oxygen. Right now he is on oxygen that his hooked up to a humidifier. It stinks because sometimes if we move him before emptying out the condensation we flood water down Jake's nose and then his heart rate drops and it really upsets him. So I cant wait to get rid of the water portion!
10. Jake CRIES!!! and it sounds sooo good. Sometimes I wait to put the binky in his mouth because his cry sounds so good to me. I like that there are things that make Jakey really really mad! That means that his brain is developing right. It's a really good thing that he knows what he likes and doesn't like.
We think we're about 2 weeks away from Jake's move to Primary's. That is going to be a huge change for our little routine that we have mastered over the past 3.5 months. But we know that when this surgery is over we will be able to start the long recovery and that will lead us closer to bringing Jakey home. I know September and October feel like a long way away but to me they are coming a lot faster then I ever thought they would.
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