September 17th was the best day ever in a long time!

Jake got sent back home to Utah Valley with the help of Dr. Gerday and Dr. Carver (the eye doctor) at utah Valley!!! I can't thank them enough! It took a lot of calls and complaints from all of us, but we were not being treated ok there and more importantly, Jake didn't need to be there anymore! All that they could do that was special to PC was done, therefore he had no reason to stay!


I will update more tonight but for now I want everyone to know how happy and thankful we are to be back to Utah Valley and out of Primary Childrens! Yesterday when I got to the hospital Jake was actually being cuddled by Keri, and sucking happily on a binky and it was the greatest sight ever!!! He is even getting milk from a syringe when ever he needs to feel a bit of extra comfort and HE LOVES IT! He just licks his lips after the drops go in and looks at us like "Come on! Give me more!!!"


But it's not just Keri, it's everyone! We love and are thankful for you ALL!!! You don't know how good it feels for Rory and I to know that all the nurses and RT's just love Jakey and go out of their way to make Jake feel happy and comfortable without taking the easy way out and pumping him full of drugs! In fact Jake was completely content today and didn't require any extra PRN doses of any drugs! What a relief. I know that Jake left Primary's hooked on methadone and morphine. And I know that it is going to take a while to get him back to himself, but I also know that Dr. Gerday and Dr. Minton and the rest of the Dr.'s at Utah Valley are the guys that can do it!!!


We trust you all! Thank you so much!


(next best thing about September 17th is that Utah beat BYU!) It's a good thing that Jake got transferred back that night at 9:00, because it kind of softened the blow for Rory!

Jake's big eye appointment

Ok, this is where we are at... 


Jake's heart issues have been resolved with the help of Dijoxin. (which he was on when we got there)


His lungs are getting better with the help of the Decadron (a steroid) and nitric oxide, and sildenifil (also on when we got there)


His Hernia's are nowhere near being resolved but we can't do anything about that but wait. 


His brain is perfect! He is showing hand-to-mouth development which is AWESOME!!!! He is licking his hand and that is really good. It shows that he feels comforted by having his hands to his mouth which is a big developmental milestone. 


He has passed off everything to get transported back out of primarys except his eyes. They say if the eye dr will give us the OK then he can go back to Utah Valley. So we call the eye guy. He says he will be there between 10 and 10 on Wednesday. I say that will be fine. I get there at 10 and plan to just wait all day which is fine. He gets to the hospital at 3:30 and our nurse calls him and tells him that Jake's mom is here waiting for him and asks if he could please check Jake's eyes first. and he says, well i will get there when i get there. He proceeds to check other babies eyes and then comes into Jake's room and checks the babies eyes next to Jake (who's parents aren't there). We think this is great he will come see Jake next... NOT. He then walks out of the room and we don't see him for another hour after that! 2 more nurses including the charge nurse go tell the eye dr that we are all waiting for Jake to be seen so that we can get the OK for transport. At 5:15 (an hour and 45 minutes after he got there) he finally came in to check Jake. After some remark to me like "See I told you I would get to him." he proceeded to check Jake's eyes. I was calm and trying to not show how nervous i really was. 


After the eye exam was over he turned to me and said, "Wow! I'm like fist pumping inside about how good Jake's eyes look! His right eye looks perfect and his left is totally stable." I say, "Great, so we can go back to Utah Valley?" he says, "Oh no, no, no Jake needs to stay here for the off chance that he will need surgery in the future." I fall apart inside and ask why? He says, "well Jake has a 1 out of 5 chance (20%) of needing a surgery in the future and if we do not feel like Utah Valley's surgeon is qualified to do this type of surgery." I tell him that I have talked to them and they are OK to do it. But he just says something to the affect that I'm acting pretty selfish if I am willing to risk my baby going blind! I told him I wanted a second opinion and I would be calling the other opthomologist. 


I called Dr. Carver, a 30 year veteran of eye surgeries at Utah Valley and he was completely shocked that Primary Childrens doesn't think he is qualified to perform this type of surgery. He wants Jake back at Utah Valley, as do we all, and said he would be contacting Primary Childrens Friday Morning. So hopefully this all get's taken care of tomorrow. 


And then the nurse practicioner has the nerve to call and tell me that I must not understand that Jake was sent to Primary Children's specifically for an eye Surgery!!!! I told her that wasn't true and she said that she doesn't believe me. She only believes what she reads on her stupid paper! I told her she could call utah valley if she needed to find out why he was transported there and she just blew me off! And again added that she still felt she was right about him going up there for an eye surgery! The truth is we had no idea about his eyes when we went up to primary's, in fact Dr. Carver had seen him the day before we left and said he would just come back the next week for his normal visit! (this was before we knew he was being sent up there FOR HIS HEART AND LUNGS!!!!!) 


I have really had enough of this nonsense, OH and one more thing...


My little baby is now going through morphine and methadone withdrawals because of all the meds the Primary Children's has got him hooked on. They haven't even weened some of them, the problem is that Jake's body is so addicted to the amount he is being given that it isn't enough anymore, his body says it needs more to do the same thing, so instead of fixing this they just added one more concoction to the mix. So now his med schedule consists of Morphine, Methadone, Adavan, Fentinal (when needed) and Now BENADRYL!!! (to calm him down in between drugs.) 


The Truth is he never should have gotten addicted to these drugs in the first place!!! I can't believe it! 


I know that this hospital does amazing things, and I know that there are probably millions of babies that are alive today because of the surgeons and dr.s at primary Childrens,  but there are some shady things that happen on the inside that you never see.  There are a few awful things that I need to get permission to have put on here, but Jake got hooked on morphine the first week that wasn't necessary, (it took us a week to get someone to listen to us about that), the staff doesn't even greet you when you come into the NICU, I have asked question after question about everything under the sun and I keep getting the answer "I dont know" which drives me crazy!, AND there are no bottles for your milk in the room dedicated to get your milk out and you have to go through security to get the bottle but then back out through security to wash out the bottle and then back through security to put the milk in the freezer! Some things seem incredibly advanced here but then other things are incredibly backwards. 


For the procedures that Jake has needed and gone through that have helped him I am grateful (even though after 6 weeks we now find Jake on the same life saving medicine that he was on when he got sent up there.) But for the inability to get answers, the unfriendly-like atmosphere, and the horrendous jam-packed construction filled drive to get up there.. I am ready to get out of there.  I told Courtney tonight, if you see some crazy person on the news getting carted out of primarys with a coat over her head for disturbing the peace in the NICU.. That will be me. Someone please come bail me out of jail because I don't know how much more of this I can take!


I wish I had the ability to pick up some of the nurses and take them with me to Utah Valley, because there are some really great nurses, and Dr. Null and Dr. Ward have been great and comforting, but there are others, (that tape jake's hands down to his diaper for instance) that i will not miss. And now that I have about got everything off my chest i will be done. 


Hopefully tomorrow we get better news! 

Cross your fingers please!

Just got done with a meeting with Dr. Null, head neonatologist at Primary Children's. We came up with a game plan for the next 5 days. Now let's hope that Jake will follow this plan and not cause any excitement for the next 5 days! The plan is...


Jake is on a steroid that can be considered dangerous but it could also get him off of the ventilator (which is also very dangerous) so it's a catch 22. But he is on it and if he continues to do good on it and is working his way down to extubation onto a nasal canula, then the Hospital will transport Jakey back to Utah Valley at the end of this week!!! Utah Valley can continue to get him off the vents and help him learn how to eat. 


If by Wednesday he isn't improving that much, then he is on the operation schedule for Thursday morning to get a trach tube put in and after healing from that surgery then he will be transported back to Utah Valley for continued care. 


All of this is contingent on his ophthalmology appointment Wednesday morning. If the Retina Dr. is pleased with the condition of Jake's eyes she will give us the ok to get transported back, but if not then this whole plan goes to pot! So like I said cross your fingers that this is a quiet week. No 3 am phone calls, no bad blood labs, no drops in heart rates and everything else that falls in NICU categories! 


Also, the ward/neighborhood has really pulled through for us through all of this but we wanted to let everyone know how much we really appreciate everything. We're fasting for Jake on Sunday, we would love your continued prayers!

Just Kidding about the Hernias going away!

So most of you know the troubles we have been having lately but I need to do a quick summary of it all anyway. Let's go back to the Hernia Operation/NON-Operation! 


Jake's little and I do emphasize little lungs are extremely sick (some of the worst lungs Dr. Day, a heart surgeon, of Primary Children's said he has ever seen in his career! But he also said he rarely ever sees 400 gram babies live so that is probably why Jake's chronic lung disease is so bad!) Chronic lung disease is the result of being so premature, and being on the ventilator for such a long period of time. But the good news of CLD is that Jake will eventually outgrow it. Lungs produce a new alveoli every 3 seconds, and these alveoli branch off little bubble things and as Jake gets bigger these NEW alveoli should be healthy and as he grows the newer ones should be more numerous than the sick alveoli and eventually take over the lungs. This could take years but it should happen.


Jake has enormous inguinal hernias. The Hernia is actually just the hole that opens up into Jake's scrotum. What has happened is that all of Jake's intestines have fallen through this hole and his scrotum has stretched out like a balloon all the way down to about his ankles. Jake's tummy cavity has formed with NO intestines in it. This has allowed the lungs to take up some of the space normally allotted to the intestines. Also the Liver has transferred over to a spot that it is not normally located. But we were desperately hoping that all would work out during the surgery and everything would be able to be put back together with the help of a silo bag.


A silo bag is basically a fake belly add-on. They would cut open Jake's tummy, sew in this bag that would be an open wound for up to 10 days and would enclose the intestines while the hernia's healed and then slowly introduce the bowels back into the tummy, allowing the lungs to only be squished a little at a time and not all at once. After 10 days then the silo bag would be take out and the tummy could be sewn back up. Sounds like a great plan.... UNTIL.... Jake actually got onto the operation table. Everything went down hill from there.


What happened during the hernia surgery is...The Dr.'s wanted to test out "What can the lungs handle BEFORE we even cut open his tummy?" and the results were horrible. They found that his sick little lungs couldn't work when the intestines got put back into his body. The first attempt was a huge disappointment in that the lungs just simply didn't work and collapsed. The second attempt they switched the ventilator over to the oscilator, which has the function of keeping the lungs open, and when they did this his lungs didn't collapse but they required way too much oxygen to keep his blood oxygenated and too much oxygen causes babies to go blind (and we are already in trouble for that) so this wouldn't work. The third try they used Nitric Oxide which opens up the veins and arteries allowing more blood and oxygen to pass through but this was unsuccessful as well. SO...


Their thoughts were, "even if we put in a silo bag, it will take way longer then 10 days to successfully introduce all the intestines back into the body, and having an open wound silo bag for more then 10 days is extremely dangerous and breeds infection. And babies who have chronic lung disease who contract an infection, 7 out of 10 die." SO... they ultimately canceled the surgery on the operation table and have decided that the best plan is (even though it has never been done before with hernias this big) They want me to bring Jakey home with the hernias. This is extremely dangerous as the intestines could get twisted or poked or strangled at any time and that would be a 911 call immediately with no warning signs. But having this disability on his bado for a couple years also means he can not sit, he can not ride in a normal car seat, or a swing, or crawl or walk. Everything will have to be altered as far as clothing and diapers and things that most people would never have to worry about, but welcome to our life! We took a few days to get used to this idea, but when push comes to shove, there is nothing rory and I could do about it so there is no point to lay and cry about it anymore, and we actually were excited to be closer to moving back to Utah Valley, closer to home, closer to my kids and everything else. And just for a bit we could see a little light at the end of the "Primary Childrens Tunnel!"


I am learning that just when I think life might get back to normal, somebody slams on the breaks and we start moving in reverse! 


The plan after the operation/non-operation... the Dr.'s decided once and for all they needed to know what is up in jake's heart and lungs. They are much too sick to not know them inside and out. So a heart cath was scheduled. A heart cath is a less invasive heart surgery than an open heart surgery but a surgery none the less. What they did was insert a probe into his vein and thread the probe down into the lungs. From there they can inject different medications to see how the heart and lungs react and from that they could pick which meds work best to fix the chronic lung disease and start him on those. Also this surgery measures the exact Pulmonary Hypertention (high blood pressure) in the lungs and the pulmonary arteries (that are actually veins) and could tell how severe they really were. The third thing they were checking for was Jake has a (not normal) 5th pulmonary vessel transferring blood from the lungs to the right ventricle which causes the heart to over pump and send extra blood to the lungs which is a never ending cycle. The Dr.'s needed to decide if this vessel needed to be clogged, transferred, or taken out. 


First the surgery was supposed to be Monday, then it turned into it would happen on Tuesday. Then we were told, oh the Dr.'s wont be here until next Wednesday! What a roller coaster because we knew that if everything went well during this heart cath we were on our way back to Utah valley (barring a few releases from surgeons.) So needless to say we were continuously disappointed after all the cancellations. But then... there was a cancellation on the surgery schedule and they felt it was possible to fit Jake in on Thursday. He got the cath last minute that day and it turned out the best thing Jake's lungs liked was Nitric Oxide, and Digoxine, a heart medication that helps the heart pump more successfully. Also he needed to stay on Sildenifil (which is actually viagra) to help with the pulmonary hypertension! We were set, we knew what he needed and all we needed was to get through till wednesday with no big hiccups and we could be transported back!


Well you know what the saying is, "TAKE TWO STEPS FORWARD AND FIVE STEPS BACK!!!


Jake has decided that he has had enough with the vent tube down his throat. And leave it to him to surprise everybody once again. Tuesday morning, one day before the eye surgeon was supposed to give us the ok to leave, Jake felt the need to take matters into his own hands/tongue and HE took out his own ventilator tube himself... WITH HIS TONGUE! The problem that happened was his heart stopped due to lack of oxygen because his throat and lungs closed up and spasmed  and they couldn't get his tube back down his throat. They gave Jake CPR for 12 minutes, with chest compressions, rescue breathing, the defibulator, and in the end it took a big shot of epinephrine in his IV to open up the airway and get the tube down. 


He almost died. We got called about 15 minutes after they got him back to pink at 3:30 in the morning. Let me tell you how scary it is to hear your phone ringing that early in the morning. IT SUCKS!!! This was also Brookies first day of preschool so there was just so much on my mind that this just was too much to handle. 


Having this happened has changed everything!!! I wasn't able to get to the hospital until after getting brooke home from school, over to her IEP test at the speech room, and to the babysitters. When I got their oh boy did the Dr.'s throw me a curve ball!!!


Tracheostemy. When Dr. Knoll said that word I about fell over out of my chair. I then about bit the head off of everyone in that room for even mentioning that word. A trach tube!!! Why would my little baby need a trach tube??? I said no, I didn't want that, I want to try different things first and I wanted the opinions from Dr. Gerday, Minton and Mark at Utah Valley. To my surprise... when I called them they were EXCITED that Jake could get a trach tube. They thought his quality of life will dramatically improve. He could suck a binky, drink a bottle, smile, interact with facial expression, etc...! 


After calming down, thinking about the positives I went back to Dr. Knoll and told him that if these people said it was ok and rory and I feel better about it, let's do it. I am scared of it, I never thought I would be bringing Jake home on a vent, but maybe if it would let me bring him home, I could get used to it. 


Dr. Knoll said that he would like to try a steriods first to see if we could just get jake off the vent all together and if this doesn't work in one week we would do the tracheostemy. 


So we are on day 2 of this, waiting to see how his lungs react with this decadron steroid. 


One more thing... yesterday Jake had another surgery that I am actually excited about. Every day jake gets poked by needles of all kinds, and his little body just can't take it anymore. I counted 13 different iv lines and blood transfusion lines the other day not including twice a day he get's his heels poked for lab tests. So what they did was put a Broviac catheter into his chest and neck. This was sewn into his body and thread through his skin and veins into his heart area. From this ONE line they can put all his meds, blood transfusions, anesthetics, AND they can draw blood from it so NO MORE heel pokes. Right now every time someone touches his feet he flinches cuz he knows that pain is coming. So I am sooo happy about this line even though it looks really scary coming out of his chest!


Well I have tried to get everyone updated the best I can. His eyes have controversial results. The one eye Dr. said the right looks great but the left needs surgery, the other Dr. said they both look good so we are still waiting on that. And other then that we are still driving up to primary's every day waiting for the results of the steroids! 


I will try to post more on Saturday, I should know the results by then. I know posting is very important and I am very glad I do it because it is my journal of all the events, but it is becoming very hard to find time for everything with the amount of time it take to spend with Jake each day and not to mention Brookie, Cayden and Rory! But I will keep doing my best!


Thanks for the support! Please don't stop emailing me and sending notes of encouragement. I may not be able to respond to everyone, but I appreciate and need each one... especially on weeks like these!