Saturday, April 7, 2012

Exhausted

It has been a very long and emotional day for both of us. We have been up since very early this morning. The nurses are giving him a few more medications tonight to help with blood pressure and getting him to pee.  They said he looks great and expect him to recover from this quite well. Thank you for all of your support and prayers today. This was definitely the hardest day so far, I think this was the day we were all waiting for, and now it's over and we are on our way to recovery!  After my breakdown today Bryt surprised me with an amazing little sculpture. She has been so amazing and incredible through this whole experience, I am so grateful to have such a wonderful wife.

We have a meeting with our cardiologist to go over the post-op echo in a couple days. We won't be having any visitors for the next week or so. The nurses really want him to have a slow easy recovery. We both miss Zoey and are getting tired of being in hospitals, but we are not in a hurry to leave. The nurses here are wonderful and giving him amazing care.

This isn't for show

We got to see him around 3:30pm this afternoon. His surgery went well and the doctors are confident they fixed the problem with the Aortic arch.  As we approached his bed, we were trying to prepare for the 'accessories' we were warned about. I was extremely happy to see him, he looks amazing and I know he is in a better situation than this morning. But seeing your child like this is something no one ever wants to see.
I am not willing to post any pictures of my sweet son like this. He is connected to so many machines and has so many things draining out of him and measuring his vitals, and like 10 different medicines going into him. I completely broke down. I don't know how to explain my emotions, it was nothing I could have prepared for. I had to leave his room, and cried the whole way down the hall, then was able to pull it together for a short elevator ride. I stepped off the elevator and broke down again, I went into the bathroom to wash my face, I could not stop crying. My precious son has been through so much in this new life. The good thing is that he does not know any different, this is all normal to him.  He also has a working aorta now, pumping blood evenly to his body. His little legs are not purple anymore and we are down to one O2 sensor.  
After taking a shower and a short rest, I am able to deal with this overwhelming visual a little better. His numbers are looking good and the charge nurse I kept bothering last night is going to be with Michael all night. He is her only baby, I know we are in very good hands tonight... and she knows I am a paranoid question machine..

Waiting to See Him

So we ate lunch right next to the surgeons that fixed his aortic arch.  They are both amazing men! They said everything looks good and there is no longer a gradient (difference in pressure, like a crimped hose). We are out in the waiting room while the nurses get him settled and hooked up to all his meds. We have the most calming spirit around us right now, we are both so incredibly excited to see our little man. I can't even comprehend these surgeons, they came up to us, shook my hand and said, everything looks good from our side. Then they left for the day.. I can't even express the gratitude I have for these surgeons, they are saving lives everyday and act as if it is no big deal. It's incredible, they are so humble.

They went through the breast plate in the center of his chest. They fixed the aortic arch and took a look at the mitral valve, which they thought may have some membranes causing some blockage. They did not see any membranes just a mis-shapen valve. They did not want to damage the valve or heart any more than necessary so they just peeked in. 

We both feel really amazing about the whole procedure and have felt calm and confident all morning. We can not wait to see him! only a few more minutes until we get to go in. We can't touch him or talk to him because he is still sedated but will be able to hear and feel us. The nurse said that can be very frustrating for them because they want to interact with you but can't because of the drugs. So we will have to look from a far, but we are both more than ok with that. We got signed up for a sleep room, so we can sleep in an actual bed tonight. So far it has been a pretty good day. I will post pics when I can! Thank you for all of your prayers and support, we are truly  blessed to be born in such a time where miracles happen on a regular basis.

The Waiting Game




We have been at childrens for almost two whole days now. Michael has been doing pretty good, he has been pretty stable. He has been able to nurse and take a bottle. One of his Belly button lines has been removed. The first night he was here, we actually went home to stay with our daughter, we both miss her so much! We both feel very guilty that we have not really seen her all week. So that first night we went home and did a few errands and let her know how much we loved her.  Last night was our second night here, we knew the surgery was scheduled for today so neither of us really slept. Bryt was up and down all night pumping and checking on Michael, I was up and down all night because his alarms kept going off and I am paranoid.  Our nurses have been very patient with me... I ask a lot of questions and pay attention to every little detail. Last night I was just going and grabbing random nurses and pulling them into our room to explain all of the alarms.. Finally the charge nurse came in and told me about every single thing on the screen and explained why each one was going off in detail. I felt much more comfortable after knowing a bit more about them.

It's about 12:30pm now, Michael has been in surgery for about four and half hours. As they wheeled him off this morning both of us filled with tears and sadly watched him go through to the operating room. Our Nurse was very confident and did all he could to comfort us. It was nice, but we also both just wanted to sit there and cry all day. We both know this was a necessary surgery and are very confident in our two surgeons. The last update we got was that they are heating up his body and starting his heart again.

 We have been warned by multiple people that he will be very 'accessorized' when he comes out of the Operating room. This has been the worst part of the entire experience so far. Bryttney has been amazing, we are trying to be as optimistic and  logical as possible. Being in a situation like this is almost surreal. You think you wouldn't be able to handle it, but some way, some how, you just cope with whatever you are presented with and slowly digest it. There are so many families surrounding us in this Cardiac Unit. Every single one of them has a unique case and every single one of them is more worried about the other people in here. It's weird how people from all walks of life can come together and genuinely love each other the moment they meet. I feel so blessed to have such a wonderful support system behind me, and to have  so many people praying and cheering for my dear son. He is only 4 days old, but I love him so much more than I could have imagined. I also still love my daughter more than anything else in the world. Being a father of multiple children has got to be one of the best things this life has to offer, it suddenly puts everything into perspective when you sit and reflect on it. I'm getting butterflies now, Michael will be out of the operating room soon. I will post pics if i can.

Leaving St Joes

Thursday morning came and we were scheduled to leave St. Joes. The nurse we had that morning thought it was ridiculous Bryttney hadn't held him yet so she let Bryttney hold him before the transport team got there. As they lifted him up there were so many cables hanging off of him! I kind of freaked out and refused to hold him, the previous nurses had made me paranoid about the lines in his belly button. Bryttney was glowing, she was so excited to hold her little baby, it had been two days since she gave birth. She had been so amazing through this whole thing, always smiling and always making jokes. She is truly an amazing mother. Michael could not have been born into a better family, we both love him soo much! Our nurse insisted on us holding him. She also swabbed his mouth with some of Bryttneys breast milk. Then she took a couple pictures of us and printed them out so we could take some home to Zoey.
A while later the transport team arrived. They were very cool, they seemed like some kind of elite commandos or something, they had all this crazy gear and were in these jump suits and everyone just kind of got out of their way. It was actually pretty cool, they got him all hooked up and then Bryt went with them in the ambulance. When they got to Chlidren's they had this crazy gurney with an entire baby support system on it. It had all his medicine, oxygen, an incubator, all of his vital signs, alarms.. It was crazy what this thing was capable of. 
 As they wheeled him into the Cardiac Intensive Care Unit, all the cardiac nurses were saying how big Michael was. They are used to primature babies I guess, so when they saw him, they were all making jokes about him being too big for the gurney and not being able to fit in the incubator. That was pretty cool, because it made us comfortable with the nurses and also confirmed that Michael was a good healthy size.
Getting put into Ambulance
About to be unloaded at Childrens

First Hours of Life

Michael's first hours of life were spent in the NICU at St Joes without either of us near him. Bryt was recovering from the delivery and I was not allowed back in the NICU because they were starting his lines. He had to get a line going from his bellybutton, up one of his veins to his heart. This was delivering a medicine called Prostaglandin, it was keeping his ductus arteriosus open. The ductus is a blood vessel connecting the pulmonary artery to the aortic arch. It allows most of the blood from the right ventricle to bypass the fetus's fluid-filled non-functioning lungs.  In Michael's condition the aortic arch is smaller and pinched off at a section. So keeping this blood vessel open was very important. If you look at the picture you can see the two little lines going into his belly button. one of them goes all the way up to his heart. It is painless procedure, but the lines are a little fragile. So after he had this done we were not allowed to hold him.  
After the lines were in and he was stable the NICU called the cardiologist from Children's to come get pictures.  She was able to get lots of really good pictures and found that the left side was not nearly as small as they had told us originally. This was a very good sign! We were better off than we were told initially and could most likely have a double chamber repair.  Michael was so calm and the spirit around him was very strong.  His grandpa and I gave him a blessing and we were both very comforted and knew he would be ok.  

After the Cardiologist left and all the NICU nurses had settled down, his oxygen levels were really good. They were up in the high 90's for a couple hours, which everyone thought was surprising for a cardiac baby.  Around 11 or 12 that night, his oxygen levels started dropping so he had to get on oxygen for a little bit. He wasn't on it for very long and kept pulling it out of his nose. He did really really well at St. Joes, and the NICU nurses there were amazing! Every single one of them was awesome and full of love and knowledge.  Bryttney and I spent most of the night in and out of the NICU checking on him and lightly 'petting' him on the arms and head. 

The Delivery

We went to the doctor on Monday afternoon April 2, and the OB asked if we were ready for an induction, baby was measuring 40 weeks already so they were ready to get him out. Bryt had been miserable for all of March and had already been dilated to a 3 for 2-3 weeks. She was more than ready for him to come. The doc left and came back with good news! We would be delivering the next day and had to be to the hospital at 6am. We were very excited to get this thing rolling. We went to St Joes Tuesday morning at 6 and had a pretty slow day with not much progress. Around 6pm Bryt was finally dilated to a 5, she had been on the epidural all day so she was getting pretty goofy, we were having a very good time together. At 7:25, just before the shift change she had two really painful contractions, she buzzed in the nurse to get checked. The nurse said "Oh, I don't feel your cervix anymore!"
Then Bryt said, "Oh No! What's that mean?" It was so funny, you could tell she instantly started thinking something was wrong. So now it was time to Push!

Here is me just after that, I was not doing too good with this delivery.... I asked my sister to stay behind me just in case I went down. Our nurse told us to hang on for a few minutes while they did the shift change. 5 minutes later a whole team of doctors and nurses, and NICU nurses rushed into the room. They had just started their shift, and Michael was coming out fast. Bryt pushed about 6 times and out he popped. They pulled him out and let him get some chest time with mommy.  I was walking around the room aimlessly with doctors and nurses telling me I should sit down.  Baby Michael was here and ready for life!
Happy mommy gets to hold her baby right away
Our little man smiling and ready to take on the world!

Thank you! We love you


My dear friends and family, you have all been so incredibly wonderful these past few months.  Our family has been so blessed to be in such a loving and generous part of the world. This whole experience has truly been a blessing.  It has brought our families closer together and has made me aware of the amazing love that still exists in this world.  I don’t know if this could have been any easier to deal with, you have all been so wonderful.  I will never be able to say thank you enough.  I love you all and hope you are closer than ever with your children and spouses, this whole experience has brought to light how important family truly is.  I just want to say thank you for all of your financial donations, but mostly for all the prayers and love we have received from every one of you.  Some of you have known my family for many  years, and some of you have no idea who we are, but still felt the urge to support and pray for us.  This truly is a testament to how much love there is in the world.

Bryttney and I have been blessed with a beautiful little boy. He was born April 3rd at 7:34pm, he came out screaming like a champion. He was taken straight to the NICU at St. Joes and stabilized with a line going into his belly button and straight to his heart.  He has good strong lungs, and was a healthy size  of 7lbs 14oz.  

Michael is in surgery right now, he was wheeled off this morning at 8am, it was very hard to see him go.  Bryttney and I will be posting his progress here, along with all the photos we take.

Thank You so much for all of your support, it has made this so much easier to deal with.