Well it's 12:08 am June 28th 2011 (My official DUE DATE!) I can't believe it has come and I already have a 3 1/2 month old baby. You know when babies are born at the hospital, I've heard it time and time again when new moms come in, and their worried about how long their baby will stay in the NICU... The answer that all the new moms get from the hospital is..."You can plan on taking your baby home around their due date."
Well Jakey is the exception to the rule BY FARRR!!! We went over our new revised game plan today with Ashlee and the doctor and the new news is not looking good. Right now I will feel lucky if it is September when he comes home. I feel like Jake has kind of come to a stand still with his growing and progression. He can't quite get past all of this CPAP stuff, and at times today they were even thinking about going back on the life support just to give him a break for a week and then try it again. I don't think I will take it very well if they have to intubate him again. He just got his voice back from the last intubation from his eye surgery. It makes me feel like a really bad mom when he has to go through all of this stuff that I know is painful!
He now weighs 3 pounds 5 ounces. He was up to 3.6 but then has since lost an ounce and can't quite gain it back. The doctors think it is because he is awake more now therefore he is burning more calories during the day. They've always told us the more sleep he gets the better, but I never wanted him to sleep as much as I do now.
I am so thankful for Rory. I am so thankful to come home from the hospital and find that all the clean clothes are put away and not only that... there is a fresh banana cream pie in the fridge waiting for me.!!! I know I couldn't have gotten through this without him. Back when the doctors didn't think that Jake would live, a good friend of ours told us that we needed to be there for each other and that it was going to be a challenge each and every day because our tempers would be short and it's always easier to take it out on the ones you love. He also said that our true selves would come out through this life changing experience. He offered his help for us if we needed some counseling at any point. Now I can't say that we haven't nipped at each other from time to time about silly things... but I can say I have never thought we needed that counseling that was offered. Rory has been the foundation that I have needed by me. We not only have had to deal with one of the smallest babies to ever live at UVRMC, but we have gone through living apart for 2 months, a move to a an entirely different city, and Rory finding a new job all at the same time. I KNOW I couldn't have done this without him.
Jake is a blessing beyond words. He has taught us that good things are worth waiting for and that blessings come in all sizes! I have this frame next to my computer that says "From small beginnings come great blessings" and I believe it with all my heart!
I know that this "due date" hasn't really gone the way it was supposed to... but I can say that I have learned so much about myself, about Rory and about our strength as a family through this experience. And in a really weird and sad sort of way and with a heavy heart I'm a little grateful for it. And I just have to keep telling myself "I CAN DO THIS!" and "WE CAN DO THIS IF WE JUST DO THIS TOGETHER!" And one day we will get to bring our little Jakey home.
He's about the size of a dollar bill
Monday, June 27, 2011
Saturday, June 18, 2011
Jake had Eye Surgery and a big milestone!
We got tossed a curve-ball yesterday when we learned that Jake had to go in for emergency eye surgery. I will back-track a bit to get everyone caught up...
Back when Jakey was born they told us that it is pretty common for preemies to have eye problems because their eyes are not ready to see light and this causes their eyes to require glasses. They also went over the possibility with us that Jake might require eye surgery to save his eyes. What happens is that when a preemie as small as Jake is born they require a ton of Oxygen to stay alive, but this oxygen also cause eye problems. This was one of those life or death decisions Rory and I had to make the first week of his life. We knew the ventilators were necessary but we also knew it could damage his eyes and obviously we chose to go ahead with the ventilators anyway.
What happens is the oxygen causes the blood vessels in his eyes to overgrow and soon they start growing crazy and not in the right places. I try to imagine it like they are weeds. Nine weeks ago, eye doctor, Dr. Carver started looking after Jake and checking him every two weeks to check the progress of his eyes. At first they seemed great, just premature. So he would come back every 2 weeks as long as they were looking OK. Then 3 weeks ago he noticed that they were starting to deteriorate. He declared they were stage one for retina detachment and that he would come back in one week to check if they had gotten worse or stayed the same. Up until Thursday night at 10:00 they were just stuck at stage one and seemed pretty good. But Thursday night we got the call that suddenly Jake's eyes had deteriorated so quickly that he was stage 3 and needed emergency surgery in the morning. The blood vessels were encroaching under and around the retina and they needed to be stopped immediately so they didn't detach it.
Thankfully Dr. Carver was able to squeeze Jake into his day and Jake's surgery was a big success. Dr. Carver used a laser to zap each blood vessel to stop it in it's course and cause the eye to stop producing a secretion that causes the vessels to overgrow. He zapped the left eye over 2200 times and the right eye just about 2100 times. All through the surgery Jake was given a medication that paralyzed him. As you can imagine one small move with the laser in the eye could be really bad. This was a bit scary to handle but everyone assured us that it was common to use and that he would be fine. They also dosed him up majorly with pain medication.
This surgery was not without negatives though. Because of the surgery Jake lost most of his peripheral vision. He shouldn't really be affected by this because he will not know what it is like to have peripheral vision so it should just seem normal to him. Also he will never be able to be a pilot because peripheral vision is mandatory, so we will not be focusing his dreams towards airplanes :o). The Dr.'s assured us that he will still be able to play sports and drive a car and do everything else normal, he will just learn how to compensate for not having that sight. He was able to save 70% of Jake's eye sight though which we are very grateful for. Jake was days away from being permanently blind!
Jakey-boy keeps receiving one blessing after another after another and we couldn't be more grateful! He is such a little trooper. After his surgery they said he would really be out of it for a few days and not want to move around much but just like he always does he seems to surprise everyone. The night of the surgery Jake was awake and moving around when he shouldn't have been and already he realized that the dumb ventilator tube was back down his throat and his first thought and intention became how to get that tube out of his mouth. He is really funny. From the day he was born he has hated those tubes in his mouth. He should think they are just normal... but not Jake, he wants them out NOW!
Today is Jake's 3 Month Birthday, we weren't able to hold him because of all that happened yesterday and we really couldn't talk to him much because the nurses don't want him wiggling around, so hopefully we will have a better time celebrating with him tomorrow, but Rory was able to make Cinnamon rolls for all of the staff and we sort of celebrated with them.
We couldn't have gone through any of this without the wonderful Nurses, Respiratory Therapists's and Dr.s there at the hospital. I love you all!!! Thank you Thank you Thank you for saving my baby!
Back when Jakey was born they told us that it is pretty common for preemies to have eye problems because their eyes are not ready to see light and this causes their eyes to require glasses. They also went over the possibility with us that Jake might require eye surgery to save his eyes. What happens is that when a preemie as small as Jake is born they require a ton of Oxygen to stay alive, but this oxygen also cause eye problems. This was one of those life or death decisions Rory and I had to make the first week of his life. We knew the ventilators were necessary but we also knew it could damage his eyes and obviously we chose to go ahead with the ventilators anyway.
What happens is the oxygen causes the blood vessels in his eyes to overgrow and soon they start growing crazy and not in the right places. I try to imagine it like they are weeds. Nine weeks ago, eye doctor, Dr. Carver started looking after Jake and checking him every two weeks to check the progress of his eyes. At first they seemed great, just premature. So he would come back every 2 weeks as long as they were looking OK. Then 3 weeks ago he noticed that they were starting to deteriorate. He declared they were stage one for retina detachment and that he would come back in one week to check if they had gotten worse or stayed the same. Up until Thursday night at 10:00 they were just stuck at stage one and seemed pretty good. But Thursday night we got the call that suddenly Jake's eyes had deteriorated so quickly that he was stage 3 and needed emergency surgery in the morning. The blood vessels were encroaching under and around the retina and they needed to be stopped immediately so they didn't detach it.
Thankfully Dr. Carver was able to squeeze Jake into his day and Jake's surgery was a big success. Dr. Carver used a laser to zap each blood vessel to stop it in it's course and cause the eye to stop producing a secretion that causes the vessels to overgrow. He zapped the left eye over 2200 times and the right eye just about 2100 times. All through the surgery Jake was given a medication that paralyzed him. As you can imagine one small move with the laser in the eye could be really bad. This was a bit scary to handle but everyone assured us that it was common to use and that he would be fine. They also dosed him up majorly with pain medication.
This surgery was not without negatives though. Because of the surgery Jake lost most of his peripheral vision. He shouldn't really be affected by this because he will not know what it is like to have peripheral vision so it should just seem normal to him. Also he will never be able to be a pilot because peripheral vision is mandatory, so we will not be focusing his dreams towards airplanes :o). The Dr.'s assured us that he will still be able to play sports and drive a car and do everything else normal, he will just learn how to compensate for not having that sight. He was able to save 70% of Jake's eye sight though which we are very grateful for. Jake was days away from being permanently blind!
Jakey-boy keeps receiving one blessing after another after another and we couldn't be more grateful! He is such a little trooper. After his surgery they said he would really be out of it for a few days and not want to move around much but just like he always does he seems to surprise everyone. The night of the surgery Jake was awake and moving around when he shouldn't have been and already he realized that the dumb ventilator tube was back down his throat and his first thought and intention became how to get that tube out of his mouth. He is really funny. From the day he was born he has hated those tubes in his mouth. He should think they are just normal... but not Jake, he wants them out NOW!
Today is Jake's 3 Month Birthday, we weren't able to hold him because of all that happened yesterday and we really couldn't talk to him much because the nurses don't want him wiggling around, so hopefully we will have a better time celebrating with him tomorrow, but Rory was able to make Cinnamon rolls for all of the staff and we sort of celebrated with them.
We couldn't have gone through any of this without the wonderful Nurses, Respiratory Therapists's and Dr.s there at the hospital. I love you all!!! Thank you Thank you Thank you for saving my baby!
Friday, June 10, 2011
3 pounds!!!
Jake is such a little sweetheart. He has been one of the best things that has ever happened to Rory and I. We now are completely hooked on the philosophy that good things come to those who wait! And we will wait forever for this little guy to come home with us some day!
But we don't seem to have to wait as long for him to grow these days! Jakey-boy is now 3 pounds 2 ounces and doing GREAT! To put it in perspective it took Jake almost 2 months to reach 2 pounds, but in the last 3 weeks he has shot up to 3 pounds!
He is also now doing a bit better with his digestion and pooping! I can't wait to get him up to Primary Children's to get his hernias fixed. They are now the same size as a tennis ball! He has to be 4 pounds to get the surgery so it wont be long now. Right now the poor little boy has a hard time going to the bathroom because literally most of his intestines and tummy are hanging between his knees so he has nothing to push against when he needs to poop, therefore he doesn't poop very often and therefore he doesn't digest enough to grow as fast as they would like.
But as soon as his hernias are fixed... and he gets well enough to be transported back to Utah Valley, then we can start weening him off of the feeding tube and I can actually try to nurse or give him a bottle. And as soon as he can regularly drink from a bottle he can come home!!!!!!
I can't wait! I bet my van can't wait either. It has probably one of the most abused and neglected things through this whole adventure. Rory says I have been very good to give my best to each of my kids and him but i have been completely neglectful to my mini-van. I never allowed food in my van before this, and I was always pretty on top of cleaning it out and keeping an empty garbage bag in there, but now... It is a dreadful sight! And on top of the messy grossness on the inside.. I got slaughtered by a rock on my way home from the hospital last week and it took only one block for it to crack across my windshield! So now it has to go into the shop tomorrow. The poor van!
We moved into our new house this past week and it went really well, and it is also so nice to all be back together finally! We still have one van load left and a garage sale to have at the old house and then from there we should be done with it. It has been great to have for the past 7 years but we were definitely growing out of is and my kids love the new neighborhood where there are kids in every home! We couldn't have found better neighbors anywhere!
Subscribe to:
Posts (Atom)