55 days :)

After spending his entire life in the CICU we will be going to the step down unit today :) I am one excite momma because that is one step closer to home!!!!

Day 53

I got 8+ hours of sleep last night thanks to a wonderful nurse named April :) like I have said before some nurses are gifts from God and some left so much to be desired. Noah and I have been hanging out since daddy had to work all weekend. He gets to hang out with grandma today while Gary & I go to the bengals game. Whodey!!!! The talk is we should be home by the end of the week as long as Noah continues to behave himself. I am so excited about this but I am so scared to get my hopes up. This is the biggest wildest roller coaster tide I have ever been on. But I has been so worth the ride and while I never want to go on it again I would do anything in the world for my sweet precious boy.

50 days

As I was driving to the hospital this morning I was listening to the radio and praying. I was asking God to show me that there truly was an end in sight that this rough rocky road that we've been traveling for the last 50 days with a sign that it will come to an end. As i turned the corner I looked up and saw a rainbow. Along this entire journey I have asked God to keep my noah as he kept his Noah Safe from the storm. As Noah saw a rainbow at the end of his storm I am hoping that the rainbow I saw was a sign that our storm too has ended and brighter days are ahead of us :)

7 weeks old :)

Noah has been extubated for 1 week now!!!! I am having a hard time being excited though because I am so scared something bad will happen. Noah is growing longer but has not gained any weight so we are increasing feeds and calories. He now weighs 3.3 kilos he was 3.2 kilos when he was born. He continues to amaze me with his ability to fight everyday. He has more fight in him then most adults I know :) I am so proud of him and I am completely in love with him. I can't wait till we are home and I can spoil him to no end!!!! He is never going to get put down. No matter what his daddy may have said :) cause he will never put him down either.

I wish someone would have told me how big of a roller coaster this journey would be. I know there is no way to ever prepare someone for this journey but a heads up would be nice. As many highs you experience there are as many lows and some of those lows feel like hell but the highs are heavenly. I am trying to remember I need to rejoice and be excited but it is so hard.

I have to thank my husband for being my rock. For listening to me yell and say mean things to him and about other people. For encouraging me to speak my mind and question the doctors and nurses. I am so proud of him for staying at the hospital and going back to work. I just love him to a million pieces. I don't know what I would do without him :)

9/5/12

So I start all these post and never finish them so I never publish them but that's not why I started this. I started this to tell a mothers experience something I couldn't find when we started this journey 21 weeks ago. So from now on finished or not I am going to post what I write :)

Today gas had it's highs and lows. Noah looked great when I got to the hospital this morning. We decided that today was the day that he would come off the vent again. He was extubated last Thursday for the first time and reintubated on Sunday evening because of an infection. He did well the first few hours today but as today progressed he spiked a fever again his heart rate went up and his breathing worsened therefore they are in the process of reintubating him a I type this. This just fucking sucks!!!! He is to little to have to go through all of this. He hasn't done anything to deserve all of this. I have done so well not asking why or what if but right now all I wan us for God to tell me why this sweet little boy of mine must endure all of this. He has been through more in the past 3 weeks then most people have to go through in a life time. It's not fair!!!! It fucking sucks!!!! All I want to do as his momma is hold him and cuddle him and make all of this pain go away but I can't. Its like no one cares what he needs what his momma needs. He is three weeks old today and I have never really held him in my arms. I got to lift him up one time for 30 seconds while they changed his bed but never have felt him in my arms.
My heart breaks for Gary there is no reason any parent should endure any if this but let alone someone with their first child. It's not fair to him at all. I want him to hold him and cuddle him in his arms too. I just want us all to be home under one roof. I want life to go back to some balance of normal I want to pick makayla up from school and get Colton off the bus. I want to spend the day with my 2 babies doing nothing but loving on them. I feel like I am missing so much of their lives. I feel like an awful mother for leaving them at home and an awful mother for leaving my sweet little boy here at the hospital.

My sweet boy :)

10 days old :)

Today has been a hard day for me. I know how sick Noah is and I have known that there was the possibility that he would be this sick for the last 19 weeks and 4 days but I guess I held on to the fact that maybe he wouldn't be. I have read every single article every single website that I can possibly find on ebstein's anomaly. There is not much out there. In fact there is nothing out there on the combination of Ebstein's and pulmonary atresia. I think I have found research on 2 or 3 cases other then Noah's. His combination makes up for less then 0.25% of all congenital heart disease. Which makes it even that more difficult to understand. Most of the nurses have never taken care of a patient with it and neither have the fellows. The cardiologist that had been on call this week at least understands it and why noah's body does the things it does. I don't know how many other ebsteins patients he has seen though. That's what makes this so difficult is no one knows. Noah was not expected to survive till birth and then he proved everyone wrong at 36 hours old by surviving open heart surgery. Only God and Nosh know the plan they have for his life. Only they know how long it will take him to come off the meds and the ventilator. The doctors may try to figure it out but Noah is in control. God has an amazing plan for this little guy and I can't wait to see what it is.

I got to hold him today for about 60 seconds while the nurses changed his bed which made my day. I have waited 9 days to hold more then his head and hand. I can't wait till I can keep him in my arms for hours :) no matter what his daddy says I don't think he will ever get put down ;)

I realized today actually how sick he is. I have said since day one I will do what ever I have to to get him home. If that means a baby with a feeding tube or a vent or oxygen. Then that's what we will do. What ever Noah needs we will do. It might not be exactly what we had planned but it is out of our control. But to hear someone say out loud to me that all if these may be a possibility makes them all too real. No one is saying any of these are a possibility until weeks down the road but still to hear someone else tell me yes this might have to happen scares the fuck out of me. I still will do whatever I have to to get him home.

I know we will have bad days and good days but up to this point we have had so many good days it's hard to except the fact that he WILL have bad days.

Noah is on the vent still and we are slowly weaning his settings. He will tell us when he is ready to come off. Our biggest concern currently is his heart and the complete heart block that he is in. We are running out of days for it to fix itself. I know in the big scheme of things a pacemaker is not that big of a deal but my sweet little boy does not need another surgery. We are still on a calcium chloride drip to help his heart contract and fentanyl to help keep him sedated. He has started feeds of breast milk through a nasal tube. He is tolerating them well and as we increase those we are decreasing his TPN and lipids.

I just can't wait until we are all home and under one roof. I need all my babies and my husband home :)

Please continue praying that we can find noah's happy balance of meds so we can get him off the vent and home. We still have a mountain to finish climbing but I know when we get to the top the view will be beyond amazing :)

Oh I forgot to write that Makayla and Colton got to meet Noah on Thursday for the first time :) they ofcourse were in love with their new little brother and can't wait to bring him home and spoil him rotten too :)