Baby Jake Fundraiser!

We have received so much love from all of our friends and family over the past 7 months and we appreciate every thought and prayer for our family. Abbie Taylor has offered to put together an event to help raise money to help with Jake's medical costs and now funeral costs! We are so overwhelmed with gratitude with all the love and help that we have got from the community, friends and family!!! We want everyone to know that this event will be a chance to remember Jakey-boy, and a chance to have fun and laugh together as friends. We couldn't have gone through this without all of your support, kind messages on facebook, Jake's blog and phone calls. We would like to thank you all in person at a fundraiser in his name. Tickets are available if you would like to contact Abbie. Here is what she has posted online...






Jake is the second smallest baby born in Utah county. Jake has been through ups and downs of what we might call a roller coaster. In the short 7 months Jake made a difference in lots of peoples lifes. Please Join me in Celebrating the life of Baby Jake Hansen Sat. Nov. 5th Please contact Abbie Taylor via email, facebook or phone for tickets to Baby Jakes Fundraiser. Please pass this along and repost. Thanks for your help. Tickets are also going to be available for purchase at Gunnison Valley Bank at 10 s Main in Gunnison and Americanwestbank at 135 e 200 n Salem ut.
$10 for family of 6 
$2 for individual

www.babyjakehansen.blogspot.com

Money donation are also accepted and can be Mailed to PO Box 686 Sp.fork Utah 84660






Thank you all sooo much! Jakey was a miracle boy. He has touched the lives of everyone not only around him but all over the world. We have received messages from Europe, Japan, and South America, from friends, and friends of friends, and family of friends! It's amazing what this little boy has done! He has proven that everything can be accomplished if you try hard enough. 


We love you all, thank you for the support and love through all of this!

Please help the NICU in leiu of flowers

If you are interested in making a donation in honor of Jake to the UVRMC NICU this is the process...
1. log onto utahvalleygiving.org
2. click on "How you can help" link located on the left side
3. click on "online donation form"
4. fill out the form specifying it is in honor of Jake Hansen
5. Detail the notification form to Rory and Cari Hansen and our address of 809e. 240s. Salem Utah 84653 so we can make sure the NICU receives the donation.

See you soon Jake

Our little boy and baby brother, Jake Michael Hansen, returned to his Heavenly Father Tuesday morning after a valiant seven month fight in the NICU. Jake passed peacefully in the arms of his mother and father while surrounded by loved ones.  Jake was born March 18th, 2011 weighing only 15 ounces and his little heart just couldn’t keep up with his amazing spirit.  Jake was the star of the NICU, where nurses learned early how big of a fighter and sweetheart he was.  Jake defied all odds from the minute he was born and taught everyone around him the true meaning of faith and love.  He loved being cuddled by his mom and dad and sung to by his big brother and sister.  He loved being dressed up, holding and playing with his stuffed animals, and being read to.

Jake is survived and remembered by his mom and dad, Rory and Cari Hansen, and his big brother and sister, Cayden and Brooklyn.  He will also be remembered by both sets of his loving grandparents, Lynn and Janet Walkenhurst (South Jordan) and Grant and Janet Hansen (Mayfield), his uncles Kevin Walkenhurst, Kasey Walkenhurst (Devyn) and Kyle Hansen (Karen). He was extremely loved by all of his Nurses, Respiratory Therapists and Doctors who have become part of our family.

At this time we would like to thank everyone who has loved Jakey and has helped make the past seven months as special of an experience as it could ever be. We feel blessed to have had the privilege to share countless memories with our little angel and with the people who loved and took care of him.

A viewing will be held for everyone to get to come meet our precious little angel at Walker Mortuary, 187 South Main Street in Spanish Fork on Friday the 21^st from 7 – 9 pm. A second viewing will be held Saturday morning at the Loafer View Chapel at 1129 South 250 West in Salem from 9:45 to 10:45, after which the funeral service will take place at 11:00.  A tribute page has been set up at www.walkerfamilymortuary.com if you would like to leave a message for our family there. Also you can leave a message on Jake’s blog at www.babyjakehansen.blogspot.com.

We would like to extend the wish that in lieu of flowers, please make a donation to the Utah Valley Regional Medical Center NICU. They saved our baby’s life and made it possible for us to have countless special memories that will last a lifetime. 

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! 

BYE BYE HERNIAS!

I'm getting ready to go to bed... we have a big day tomorrow and after talking to the surgeons tonight I now know that they feel like they have a big day ahead of them as well! Dr. Molitor, (a Primary Children's bowel surgeon), said that he has never seen hernia's like this before ever on a baby! SCARY!!! But he is confident that they will be able to fix these but we wont know the extent of the damage until they get him opened up and check it out. 


Some of the things they are worried about, first and foremost...


1. How are his lungs going to react to this surgery


2. How will his pulmonary hypertension react, and will his heart be able to handle it. 


3. Will the Hernia's be fixed forever after this. 


4. One of the things I am most worried about, and the Dr. confirmed my worries tonight, is how has his reproductive system been affected by this? Well Jake's Dr. was very honest by saying they were not sure if this has caused problems but that there is a very big chance that his testicles are not in the right spot and may have been extremely damaged in the process of these hernia's growth. He was pretty honest when he said there is a good chance he WILL have reproductive problems. I know this is not the end of the world and there are ways around this but I hope for his case that everything is in tact. 


5. The incision for the Silo bag will go across the tummy and will leave quite a scar, but mostly it will affect the inner muscles and there are worries about how his stomach muscles will handle this. Jake may require a few post surgery operations to go in and repair the areas that have to be sutured up with mesh and plastic materials. But the Dr.'s are confident that they wont be a big deal and 2 of the post-op surgeries can be done in the next 3 weeks, so before he ever leaves the NICU so that is good. 


6. Will he be able to get a G Tube (gastrointestinal feeding tube)? I HOPE I HOPE I HOPE!!! This means he might come home earlier with the G-tube in and I would be able to teach Jake how to bottle feed at home and then fill his tummy up with milk through the tube. They will not let me bring him home with the tube down his throat but I could if it is sticking out of his tummy (weird huh?) But I really hope this works out. 


I have a big day tomorrow, Rory did not feel comfortable asking for the 4th day of work off, so I will be going alone in the morning but Rory did ask for back to School night off (I was proud of him for that cuz he was nervous), so he should be there with me when Jake comes out of surgery. I'm kind of nervous! But mostly excited for this chapter to be over!


I have pictures of these hernias if anyone is interested. I do not feel comfortable posting them online because they are really quite disturbing to see, but if anyone is interested send me a text or email and I can email the pic to you. 


If you can say a special prayer for Jakey tomorrow. And throw my name in there at some point. I know all the prayers have been crucial for our family through this but mostly for Jake. 

Jake's 1st Car Ride (well sort-of!)

Jakey is now up at Primary Childrens! On Friday morning we got the call that he would be transported. We knew it was coming but it was still a bit hard to hear. A bit of me was hoping to never leave there because we have grown so comfortable with the location but mostly the staff. But I knew it was best for Jake to get him on the path of recovery and the path to go home. This didn't make it any easier watching Jake get loaded up into the ambulance and watching the ambulance drive away. Rory's parents came for the transport send off, and so we had them pick up Cayden and Brookie from the babysitters on their way so they could be there for it too. I was glad to have very familiar faces riding with Jakey in the ambulance. Thanks Donn and Jen for being there that day. My first plan was to ride with Jake but I couldn't sit in the back and I didn't want to be alone so I stayed behind with Rory instead. 


We were told that it would be a couple of hours before Primary's would allow us to visit his bedside so we decided to take a minute and get something to eat, kind of regroup and start the day over with a fresh outlook, rather then just thinking about what we had just left behind (friends and family at UVRMC). Lunch helped and after a bit of crying (which led me to steal a box of tissues from the hospital - sorry about that) we were ready to go meet the new staff and first find the place where Jake had been taken. 


For the most part we are excited about Primary Children's because it is one step closer to getting his hernias and heart and lungs figured out. But the drive to Primary's is going to quickly wear on us we can tell. Hopefully his stay up there is a short and sweet stay but so far that doesn't seem like it is going to be the case. In fact there is a group of babies up there that are in what's called the "long timers" group, and Jake's name was brought up as a possible new member of that group. Things that qualify you to be a member of the "long timers" group are... bad lungs (check), bad heart (check), super-uber preemie (check), Major upcoming surgeries (check) and and a few other qualifications that seem to be right up our alley! But we have decided to go through this with the best outlook possible and knowing that these Dr.'s are some of the best in the country helps us with our sad feelings about leaving Utah Valley. 


We LOVE Utah Valley. I can not express that enough what an amazing experience it has been to get to learn and know the in's and out's of the UVRMC NICU. Dr. Minton and Dr. Gerday will be life long members of our family. As well as many many many other countless nurses, Respiratory therapists, Neonatologists, Nurse Practitioners, other parents and staff at the hospital. You all saved my baby's life and you took pretty good care of me as well! I bet you didn't think you were all signed on as full time psychologists as well did ya???!!!


Jakey got the greatest care and love from each and every one of you! And I don't know if we will be back to the nicu as a patient or not (who know's) but we will be back for sure all the time. You will be sick of me for sure!!!


Jake is about 2500 grams. He is on the lowest vent setting as he can be on but they are keeping him on the vent because he is going in for MRI's and possible Cath Lab's this week and he needs to be int-abated for those so it is easier to keep him on it. Also he might require an upcoming heart surgery to repair a part of his heart that didn't form right, we don't know if this will be able to be done with open heart surgery or done less invasively in the cath lab. We will learn more from his MRI on Tuesday what he needs. 


His Hernia's are massive. We met with Dr. Downey the bowel surgeon at Primary's, who gave his best advice which was get the heart and lungs figured out, and then worry about the hernias. So that is the plan right now. But I will tell you that we learned very quickly at Utah Valley that the hernias need to be reduced in order for Jake to go to the bathroom. Well Primary's is very reluctant to take our advice on that and they refuse to reduce them. So far, Jake hasn't gone to the bathroom up there (well duh!). So if this is still the case by tomorrow I will be taking matters a bit more seriously with the Dr.


As for now we are settling into a new routine and a new drive, (we might need a new car in a few months), but Rory goes back to work in a week and Cayden starts school the week after that and Brookie starts school the week after that! So who knows what our plans are for the next few weeks but for now, it is a bit under control. I will be calling people for babysitting soon so please if you are interested I could use the help but I have no idea when!


Thanks for all the thoughts and prayers still. This might seem silly but we still need them. Jake is a master of proving everyone wrong, so maybe he won't make it into the "long timers" group maybe he will just need to take the red eye flight through this nicu and we can get him home to meet everyone!

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!

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. 

Today is my DUE Date!

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. 

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!

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!

Well Jake, if I could say anything to you right now, I would tell you how much I love you and how stinking cute you are and that I can't wait to watch you grow up because I know you have big things planned for you and I am excited to see what those things are! You are our little miracle, who has taught us more than anyone will ever know! I want you to know that from day one you have had this light in your eyes and everyone can see. You proved to everybody from day one that you are a fighter, that you know what you want, and that you are worth fighting for! And I love it!!! Love you Buddy!

2 lbs and 13 oz's and getting bigger by the minute!

This message is going to be short but sweet because we are just getting ready to ride back to mayfield to pick up the rest of our stuff! 

But I wanted to make sure and let everyone know this has been a GREAT WEEK!!! I got to hold Jake every day and so did Rory and Jakey-Boy is loving it. He even seems to recognize me now. When I walk up to his bed and start talking he will wake up and start squirming around because it is as if he knows he is getting out of the bed! The nurses are sure that he knows me, I'm a bit more questionable about it but I have seen him get excited to see me this week so maybe they're right!

Also... Jake is an enormous 2lbs 13oz!!! Last night alone he gained 3 ounces. They have added a lot of calories to his milk that he recieves, so much that is is closer to heavy cream than milk but it seems to be working great! The Dr.'s number one plan right now is fattening him up. The bigger he is the healthier his lungs will be and the closer he will be to get his hernias fixed. Dr. Minton, the head surgeon and the most brilliant Dr. we have met has told us that in his 30+ years these are the biggest hernias he has ever seen on a baby. I wont post a picture of them because they are quite hard to look at, but i will tell you Jake's body is pretty much broken up into 3 sections, a head, a tummy and a second tummy (all of which are the same size). Hernias are not supposed to be fixed until the baby is 6 pounds but we aren't sure Jake will ever make it to 6 pounds before Christmas if they don't fix the hernias, so Dr. Minton is preparing to fix the hernias at 4 pounds which is still a bit away but closer than 6 pounds. But now he is starting to get a 3rd hernia on his bellybutton but it doesn't look bad yet.

Something else that is really cool to watch is Jake's cartilage is forming finally so his ears are starting to form and stick out! He is looking more and more like Cayden every day. His dimple in his chin is all his own though.

2 of the best friends I have made in here are all getting released this week. I am going to be sad to see them leave but sooo happy for all of them! 

Mari... You have been so great to have here with me. Thank you for the encouragement and your example. I am planning on starting my own treat box for Jake's bed now that your chocolate basket will be gone. I wish the best for you and your Jake and little Jaden! Good luck in Chicago! Keep in touch!

Maggie... I know that I will see you again because Jake and Ezekiel are going to be best friends as they grow up! I can't wait to watch our little boys grow up and see who is taller then whom their entire lives!  Have fun at home with your first little guy! Don't spoil him too much :o)

Good luck guys at home and if you ever get bored you know where you will find us for a while!

Thanks for all the support everybody!!! We have the greatest friends in the whole world.

The Miracle Baby

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!

Sorry it's been so long...

Hey everyone, sorry i haven't had the chance to post anything on Jake recently. We don't have access to the internet at home so I am having a hard time finding time. But for a quick update I will let everyone know that on mother's day I got to hold Jake!!!!!!!!! It was the best feeling to get to hold him. The nurse's had to get special permission because he is still so fragile and because he is on a ventiltor that isn't the safest thing to move around. There were a lot of precautions taken and in the end i got to hold him. The best thing was that Jake was awake and we just stared at each other for over 45 minutes. It was GREAT!!! It was the best Mother's Day gift ever!

The other big news is that The RSV ban has been lifted so Brooklyn got to meet her baby brother on sunday! She was in heaven and jake was wide awake to be able to look at her as well. I was so excited to listen to Brookie talk to Jake, she just kept saying Hi baby Jake, Hi Baby Jake over and over! She got to hold his hand and touch his tummy. I was really happy for her. She has been asking when she could meet him. It was very nice! I only wish Cayden could have been there but he will get to meet him on Saturday! 

As for Jake he is now 1 lb 15 oz. He looks and feels much bigger to me even though he is still quite small. He is getting his intestines checked today to see if there is any obstruction that is stopping the milk going down which is stunting his growth, but as for now the X rays have all looked good. Which for me, I kind of wish they had found a problem so we could just get it fixed and end this waiting game but he just might have really premature bowels and it will just take time for them to mature so he can grow. 

Hopefully next time you hear from me we will have got to the 2 lb mark!!!

A Little Scare and a Little Temper!

Jake is an amazing little boy. His respiratory therapist today said that he has a little temper and doesn't like to be messed with a lot :o)! I say Good for Him!!! I'm glad he is a bit feisty and let's people know when he doesn't like being messed with. He doesn't cry when he is bugged, he just furls his brow and his face turns bright red and then he clamps his little fists and starts swinging his arms around like he is going to knock someone out!!! I love it! 

Monday morning I visited Jake like normal and everything seemed just fine. He had stopped getting milk through the feeding tube again because his belly was distended and his lungs get squished when that happens so they have to stop everything and let the belly relax. This is getting to be quite normal so I didn't think anything of it. But later that night I found out that the Dr.'s felt like they needed to intervene and get a specialists point of view, and in order to do that, Jake would have to be transported up to Primary Children's. This was not good news to me. I like it here and I have my schedule and routine and the thought of the rug getting pulled out from under me AGAIN was a lot to handle. I kind of lost it for a minute and went into panic mode of finding friends to help with Brookie and figuring out how I was going to make it to Cayden's play tomorrow, and figuring out how I would be back to Mayfield on Sunday in order to give my talk in Sacrament and figure out a hundred other changes I was going to have to make. Rory assured me it would be just fine but it's hard because he isn't up here, it's just me going back and forth twice a day and it's hard to get everything done each day without him. 

Luckily... The specialist from Primary's went over all of Jake's films and notes Tuesday morning and decided that there really isn't anything they can even do for him at this point because he is too small, so in the end they all decided it would be best to leave him here until he grows a bit more. This doesn't mean that Jake will never go up there, it's just means that for now he is in a good place and they just need to keep trying to feed him so that his body can grow. 

Well, that's about it for us right now. Thank you again to everyone who is helping us out through this crazy time!! Thanks for all the letters and cards and gifts, it means so much to us to have such wonderful friends and support! We don't know how to ever repay all the kindness we have received. You all are amazing!!!

6 Weeks Old!!!

Jake is now officially 6 weeks old and for the most part has had a good week. He is finally growing a bit better now that he is able to get some milk through his feeding tube. He weighs a big fat 1 pound and 11 ounces which still sounds so little but when looking at him we can actually begin to see a difference. If you think about it, he has just about doubled his weight and size since he was born. And because their wasn't much to double it makes a huge difference. 

Jake's lungs are still just an uphill climb. They have stabilized since Monday which is great news but they aren't as good as what we had hoped. But the Dr's are glad that he made some improvement and they hope with each dose of the steroid he will improve more and more. The hernia's are still the other big issue. We did have the specialist come and look at them. He and Dr. Gerday still agree that it would be to risky to fix his hernias and they don't think the operation would last long; that his flesh in his tummy is still too weak and it would just tear again creating two new hernias. So for now we wait! 

Cayden and Brooke now have been able to see Jake which has been great! Brookie loves looking through the window and watching Jake. In fact we have to drag her away from it when we're there. Cayden was surprised at just how small Jake really is. He had a bit of a crash course with a doll to prepare him for all of Jake's tubes and I think it did help because he has seemed to calm down a bit when we talk about Jake. Sometimes I think Cayden is a bit too smart for his age. It really took some time to prepare Cayden for his sick little brother. He is really worried that Jake will be in a wheel chair or that he won't be able to play or talk. All we can tell him is that Jake is so strong right now and only time will tell but that everything looks good so far with his brain and body. I will be posting new pictures soon of Jake with Rory's wedding ring and a new dollar bill picture that we took. 

Thank you everyone for all the fun times this week: going out to lunch and dancing!!! It has been fun to get together with everybody!!! Thanks for your support and friendships!!! We love it!

Baby Jake Update

This is one of those days when I just am trying to be strong for everyone around me but inside I feel like I'm falling apart, and really there isn't any big explanation for it. I had just gotten off the phone with Ashley (Jake's nurse) today and I walked into the store when one person walks up to see how I'm doing and I burst into tears! I think mostly I am just exhausted. Physically, emotionally, mentally exhausted. I am trying to be in a million places and get caught up on a million things all at once and all the while stopping every 2 hours to pump. (I had this goal to make home made real nice thank you cards for all of you who have helped us out so much and as the weeks have gone by I am realizing that they are not getting done, and I feel awful about it, so I apologize for everyone who deserves a card and has not yet received one.) I don't have quality time with any of my kids, and trying to stay up to date and in contact with all the nurses and doctors at all times is extremely important so that we know what is going on, especially on days when neither of us can be there with him, but at the same token it is taking a toll on how much I can handle. And I seem to catch myself taking it out on everyone around me, especially my perfect kids that I love more than anything. I come home every week to be with and see Cayden and then I am so stressed out the whole day and have a list a mile long that I can't enjoy it at all. It's just seems worse on Jake's bad days like today.

Jake isn't having a great day. He was given some steroids last week that greatly improved his condition and everyone was real excited to see what progress he had made. Since the steroids have now wore off he has regressed back to the sick stage he was at before. For me, this has been horrible terrible news that has greatly affected my entire day. But when talking to the doctors tonight, they told me that this was not unexpected, and that they are just glad that the steroid did show them that it IS possible for Jake's lungs to improve. The problem with this steroid is that being on steroids at such a little size can cause neurological damage and also some intestinal problems. Therefore we can not give him the steroid for another week or so, and we just have to sit and wait for him to get a bit bigger and more mature. Other than that, his milk feedings were temporarily stopped to rule out any infection, or implication that the tummy was affecting the lungs, and now they have been ruled out so his feedings have continued which is always good news. He is receiving 3 ml every 3 hours. 5 ml is a teaspoon so 3 is not even close to a lot but it is better than nothing.

A good thing that happened today is that Merri Lynn showed me that I can get comments on here. I have always just had barely enough time to post a comment and then run back home to be with Brookie, I never took a second to notice that i can actually receive comments from people. I was able to sit down today and read what everyone has been writing.

You can not believe how grateful I am for everyone's support and love through this time. Support from people I don't even know but that give me hope that we can conquer this, and that we will eventually be okay. I feel like my life, that was once (for those who know me) perfectly scheduled out every single day and that I was in complete control of, has now been turned upside down on it's head and I can't control any of it. This has not been easy for me. I feel as though some days I am drowning and I have to fight to keep it together for my family. I can't even hold my little baby and he is almost 6 weeks old, and today they are telling me that the thought of holding him is even further away. I just don't know if I am strong enough for this sometimes. I know that the Lord doesn't give us any trial that we are not strong enough for, but I feel like I am needing some extra boosts. It's hard for me because I am not one to admit to defeat, so when asked how I am doing I like to put on a happy face and show that I am strong and I can get through this... but on days when Jake is sick like today, I feel so sick inside and I feel like I am mostly trying to convince myself that he will make it.

I know Jake is strong!!! Stronger than I will ever be and I know he has a reason for being here. I can't wait to see what he can do as he gets older, but for now I guess we just wait.

Jake's still just hanging out!

I wanted to put in a quick update. Jake is doing great! They are starting the process of weaning him off of his ventilator onto another less powerful ventilator which is great. He has a few weeks to go with that but at least there is progress. He is handling his feedings better now and they are actually getting bigger which is also great. He pooped two nights ago which is something I never thought I would celebrate so much in my life. I never knew how much our Intestinal system affected every other part of the body!

Jake has 2 massive hernias. So big in fact the nurses say they have never seen any get this big on a baby this small. The Dr's here at UVRMC do not perform bowel surgeries so they have been in contact with primary childrens and at this point the D's have all decided that he is too small and delicate to perform anything yet and they also think that the hernias look quite healthy as far as no kinks, or hardness. They are soft and can reduce back up into his belly quite easily. The problem that we are having with the is they hurt him when they get reduced but if they dont get reduced then gasses and poop are getting stuck down in them and it makes it harder and more uncomfortable for him to poop! Anyway, that is one of our major concerns right now.

Brookie and I are doing good! I can't thank all my wonderful friends and neighbors enough for all the love and support they have given to us. I couldn't have gone through this and mostly wouldn't be able to visit Jake without them!!! Thank you Thank you Thank you. And I love all my facebook messages that I get. Especially on rough days it is so nice to read all your comments, it reminds me that Rory and I are not alone in this.

If anyone knows of anywhere to find soft, button-up boy doll clothes let me know. Jake is to the point that as long as he doesn't have an IV in his hand he can wear a shirt, (although they look like dresses on him)!!! The poor little boy! His first room will have pink walls and his first outfit is a dress!!!

Happy First Month Birthday Jakey!!!

Happy One Month Birthday to Jake!!!

                I can’t believe a month has already gone by. When Jake was born he weighed 430 grams. He is now weighing around 680 grams, which is approximately 1 pound 7 ounces. He has had a major PDF heart surgery, 8 blood transfusions, and countless IV lines put in and out of his little body each and every day. Art lines and Pic Lines put in every extremity.  His poor little heals have been poked to death because his art lines never work. He has 2 major hernias that the doctors are becoming more and more concerned with, and they hurt every time they get pushed back into his little body. Jake has been switched back and forth from ventilators because each one fixes different problems so they have to experiment to find out which one will work the best for Jake. He has gone days and weeks without eating at a time. He has developed a Chronic Lung Disease that will be a long term problem that we will have to face as we bring him home from the hospital, meaning he will most likely be on oxygen when he comes home.

And yet with all this little guy has gone through and is going through, he doesn’t cry. (I’m sure I’m crying enough for the both of us.) He has a feeding tube and ventilators going down his throat so even if he did try to cry nothing would come out because they run right through his trachea. But he barely ever tries to cry. He just lays there in his incubator and looks around at everyone with his big blue eyes, with hope and love pouring straight out of them. I wish so badly to be able to take his place. I know I wouldn’t be as tough as he is. I would cry and scream the whole time I’m sure. We hear a lot of crying when we are in the NICU from other babies, but not from Jake. He is getting a bit stronger now and can make a mouse-like squeak, but it is never in anger or sadness like a cry, it is more of a “Hey what’s goin’ on guys!”, or like he is trying to talk to us. I’ve never even seen him open his mouth like he is crying. He yawns a lot and that is about it.

He is so strong. I could never be that strong. I was having a really hard day last Friday because I just couldn’t believe that my body had done this to him. I feel so bad and responsible that he has all these life-threatening things that can happen to him at any moment and that he was lying there suffering painlessly in his bed. Heather the nurse had to remind me that Jake doesn’t know any better. All he knows are these tubes and shots and pokes and lights and people coming and going all day. And even though his is very drugged up and they don’t think he can feel any pain, all he knows is suffering. I can’t wait till he is home and we can show him how real life is and how fun and comfortable it is. I just want to be able to hold him one day and not have to put him down after 5 seconds. I can’t wait till I can actually really touch him and hold him so I can tell him that everything is going to be okay, because at this point it is still too early to tell, he is just so fragile and little.

Jake is TINY!!!

It is really hard for everyone to really grasp how little he is. I don’t think anyone can really comprehend it unless you see it with your own eyes. Pictures just don’t do it justice at all! I’m working on some fun picture ideas but we have to be so careful about the germs that he comes in contact with so for tonight I just tried to find ways to explain his size better.

1. His hand spread open is the size of my thumb nail.

2. The widest part of his thigh is skinnier than my pinky finger.

3. Jake’s head is about the size of a tennis ball, smaller though.

The things that he has that I think look huge comparatively to his body are his fingers and his feet. He has long feet. At least they look big compared to his legs. And his fingers are so long, they look like basketball hands already. The doctors think there might be a chance that he will play sports some day. It all depends on what or how many preemie conditions he develops. I hope he can be a normal boy and play anything he wants.

His one month birthday is Today!!! and I know there isn’t really such thing as a one month birthday, but coming from a perspective that we never thought he would make it this far or have a reason to celebrate, I am going to take every birthday celebration I can get! Hopefully Jake mostly sleeps through this little birthday party, because the more sleep he gets now, the stronger his lungs and body can be for the next party we throw at his 2 month birthday party!!!! Happy Birthday Jakey-Boy!!!