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!