Yesterday Noah had to visit the Cath Lab again to have a hole in his heart stretched. The hole is between the left side and the right side of his heart. We all are born with one but it eventually closes. The Drs wanted to make his bigger to help relieve some of the pressure on the left side of his heart. When they went in, the Surgeon said his left ventricle is the largest he has ever seen in a baby this size. The pressure is building up so badly due to the small aorta that it's stretching it like a balloon.
If the procedure ends up helping his pressures they should be able to ween him off the vent soon. If he isn't able to be weened then thats a bad sign. The Dr said depending on how he does over the next few days will be a good sign if he will be able to survive until a donor heart is available. Thats scary for me because today he had a hard time. Every time I went to the Hospital, they ended up needing to bag him (help him breath) because he was so pissed off.
While they were in the cath lab the Dr also found that some of the veins going into his lung are really small. We are not sure if it's caused by the pressure from the enlarged heart or if they are truly stenostic (too small like his Aortic Valve). If its not caused from him heart thats very bad because there isn't much they can do to treat it and it usually doesn't have a good outcome in the long run. But he said not to even worry about that right now because there are much more important things to deal with at the moment. And we won't know for sure if the large heart is causing the problem until he gets a transplant.
Every day it seems it becomes more and more critical for him to get his new heart right away. I pray several times a day that if someone finds themselves in the worst situation imaginable that they will at least have the compassion to donate their organs to save someone elses baby... To save my baby.... and that Heavenly Father will bless them for their charity.
I think this situation has been harder on Lilly than I anticipated. She hasn't been her normal happy self lately. She throws tantrums over EVERYTHING!!! And her newest favortite thing? To be super naughty at bed time. Two nights ago she kept bouncing up and screaming (yes, screaming) TADA!! And then she would laugh and laugh. She was up until 11. Last night she kept screaming Dadda!! she did this for an hour and a half and finally went to sleep about 10. I know she misses her Dad. We went to Wendy's for lunch yesterday and a guy with a shaved head sat by us. She looked at him and then looked at me and asked were her Dadda was. It was sad.
I'm sorry I haven't been able to update lately. In case you didn't know... The Dr's decided that the Ross procedure (the valve replacement surgery) wasn't going to do enough to solve Noah's heart condition. There are just too many problems with his little heart. They gave us two options; Do nothing and he wouldn't survive for long or have a heart transplant. As you can imagine, doing nothing wasn't an option. We decided to have him get a heart transplant. It's scary and risky but the odds are so good and he will be able to have a normal life and even play football if he wants. He will need to be in immunosupressant drugs the rest of his life but we can manage. People do it all over the world.
The catch? Primary Childrens doesn't have an active heart transplant program at the moment. And even if they did, they stopped doing infant heart transplants a long time ago since too many babies died waiting for a heart. We were given the option of transferring him to Loma Linda, California or Denver, Colorado. My Dad's cousin has had a heart transplant and knows lots of people in the same position. She had good things to say about Loma Linda and we had pretty much decided to send him there. But then we prayed about it and Heavenly Father said Denver.
Noah was flown by Life Flight Friday afternoon. Shane, Lilly, my sister Jennifer and myself packed up our stuff (very quickly since we weren't given much advanced notice) and left Friday around 6:30. We got into Denver about 3:00 am. We had been staying in a Halfway House sort of place affiliated with a local Hospital over the weekend waiting to get into the Ronald McDonald House. The room was SO small and cramped. We hoped we wouldn't have to stay there for long. Then, yesterday, I took Shane to the airport to fly home (he has to keep working so we don't lose the precious insurance!!) and on my way back, the Ronald McDonald house called and said there was a room available if we could be there within the hour. You can bet we were. After we checked in, it took me 2 1/2 hours to get everything loaded into the car and then unloaded. I'm still not a very fast walker. Its only been 2 weeks since I had a baby but... I did it!!! (Jen had to stay in the room and watch Lilly).
Speaking of Jen; words can not express how thankful I am for her. She put her life and desires on hold so she could come here and help me with Lilly. Not many people would do that. She didn't even hesitate. And since we have been here she has been wonderful. So accommodating and helpful. I am truly thankful for such a wonderful sister and all that she has done for me! I love you Jen!!!
So... Noah was put on the transplant list last night. We just have to wait for a heart now. There are two types of transplants that we may have to try if we end up waiting too long. (The Dr's are having a hard time managing him. They can't seem to ween him off the vent... yes he's back on. He was off for about 4 hours is all). One is called a DCD or Death by Cardiac Donation. I don't know too much about it yet but from what I gather it means a donor who they can't determine is brain dead but the family opts to remove life support anyways and then the heart stops beating on its own within 30 minutes. The other is called an ABO Incompatible which means they use a blood type other than his own due to availability and since he is so young his body doesn't reject it since it hasn't made antibodies to the other blood type yet. But, lets just hope he gets a regular heart transplant very very soon.
I will need to stay here in Denver for at least 3 months after his transplant surgery so he can have followup visits etc. We are hoping that they will be able to work with Primary's for his follow up care so we can come home sooner but as of now, thats not the case. So, at least 3 months here and then we'd come back yearly for checkups, etc. Thats a VERY long time away from home. It would be SO much easier if Shane could stay. It's so hard being away from him. But, we'll make it work. Noah deserves every chance he can get and we truly feel that he is getting that here in Denver.
Thank you SO VERY MUCH to everyone who has supported us and prayed for Noah during all of this. Words can not express our gratitude for the love and compassion that everyone has shown us. We are truly blessed!!!
Two final notes for today: I named this post Rocky Mountains?? because Denver doesn't have any mountains. I see some out in the distance on the edge of the city but they don't have anything on the SLC mountains. I have no idea why everyone refers to Denver when they talk about the Rocky Mountains. If you want to see beautiful REAL mountains, come to Salt Lake!!
Second: Muranda, I am SO sorry I didn't wish you a happy birthday when we talked the other day. I didn't even realize what day of the week it was let alone the day of the month. I am so sorry!! But... HAPPY BIRTHDAY!! and even more, thank you for being so concerned about us and for arranging dinner when it was your special day! You are a sweetheart.
This Wednesday all the cardiologists at PCMC will be meeting to discuss all the different cases and what should be done. It is then that they will make the decision to either do a valve replacement or recommend Noah for a Heart Transplant. Either way, the surgery is VERY high risk and there is a good chance it will be too much for him to survive. Right now, they are just keeping him stable until they can make a decision. If they do the valve replacement, we have to pray that it also fixes the mitral valve until it can be replaced when he is older (they don't do mitral valve replacments on children because they don't make them small enough). If he needs a Transplant, he will need to go to a Hospital in Dever or or California since PCMC doesn't do that surgery here.
I want to thank everyone for the love and support that you have all shown us during this time. It's very helpful to know we have family and friends who love us and are there for us. I also want to ask everyone to continue to pray for my little man. He needs lots of blessings right now and I am faithful that Heavenly Father is hearing our prayers.
This will be quick because I am so tired and I'm going to bed....
In addition to his Aortic Stenosis, Noah has another Heart Defect with his Mitral Valve. This is the valve between the two chambers on the left side of his heart. It's leaking and causing blood to back up into his heart, lungs and Liver. This has caused pulmonary hypertension. They are doing whatever they can to fix this since he's too little to have mitral valve surgery. We would even have to push up his aortic valve replacement surgery to see if that helps before we could do anything about the Mitral valve. It's scary since this has become quite the problem but doesn't seem to have many options to fix it.
This is really hard to go through, not having him home or even being able to hold him. I wish I could at least hold my little man. It's hard to see him and then have to leave and not even be able to kiss him or give him loves. While we were there today, they took him out from the Bullirubin lights and took off his goggles. He woke up and opened his eyes. He is so handsome. It was nice to see his face but made it even harder to leave... I guess this never gets any easier, does it?????
Noah Shane Martin was born June 11th at 10:07 pm. He weighs 7 lbs 5 oz and is 19" long. He has tons of hair and is a total cutie. His delivery was rough since his heart rate kept dropping really low. We were able to get him out without having an emergency c-section. Right after he was born the Dr's found a Heart Murmer. He was immediately transferred to Primary Children's NICU where he was diagnosed with a Congenital Heart Defect called Critical Aortic Stenosis. He will eventually need valve replacement surgery but we are hoping to get him bigger and stronger before we do it. So he has had a proceedure to stretch his valve and it's working enough to help keep him stable. Hopefully over the next few days he will continue to improve and he can be taken off the ventilator. He can breath fine on his own but to help ease the stress on his heart, they decided to put him on it so he didn't have to work as hard. We are looking forward to holding our little man and then bringing him home. Thank you to all of you who have helped us during this time and for all of your prayers. We know that prayers are the best medicine he could have right now.
This past weekend has been CRAZY! We got tons of stuff done. Although I really can't take any credit for it. I sat on the couch and supervised Shane (THE MACHINE) Martin do it all. Shane worked in the yard, hung up our huge mirror, rearranged our living room (to make room for his Father's Day present.. pictures to come soon), hung up our new ceiling fan in our bedroom, and cleaned out the guest bedroom. What a stallion! And I can't forget to mention that on Thursday he took my van and got Keyless Entry installed. I've been wanting it forever but we never take the innitiative to get it done. Well, he made the calls, got it scheduled and took it in. And I didn't even had to remind him! I married the greatest man in the world!
And for those of you on baby watch... tomorrow I have a Non-Stress test at the hospital first thing in the morning. I'm also going to get the results of the 24 hr protien preeclampsia test. I'm pretty sure tomorrow will be the day but I'll let you know what happens. But I think June 11th would be a nice birthday. Don't you?
I had another Doctor visit yesterday. Dr. Sharp was concerned about my blood pressure and other symptoms. He said I'm developing preeclampsia again... I now have to have non-stress tests done twice a week until Noah's born but its looking pretty likely that I will be induced on Monday or no later than Thursday. We are so excited. And... this also means I wont have to miss the 4th of July. Lilly is just going to LOVE the fireworks.
