New Beginnings

I have decided I am not very good at this blog thing. I have been thinking about blogging for a few days now and every time I think about it I am never around a computer. I had a few minutes this evening so I wanted to update everyone.  This week has been such a great week! Last Thursday we were told that if the echo done on Saturday looked good then we would be going home on Monday. Sunday afternoon the NICU doctor came in and told us that Holt's blood pressure is too low (due to the medications we are going home on) and they need another week to tweak his medications. I'm not going to lie I was very disappointed to say the least. Don't get me wrong, I am so glad we are getting such good care that they will take the time to adjust the medication and give us extra time to work on feeding, but I am beyond ready to live in Tyler again. So here were are, still in Dallas. Holt is doing wonderful. I love sitting in the NICU and holding him. We have been working on feeding and Holt is such a champ. He is doing great with the bottle feedings. We are having to add 8 calories and fat to every bottle for him to gain weight. They have removed the feeding tube from his nose because he is feeding every time with the bottle.

As far as what is next for us, well the cardiologist came in today and said that if the echo looks good tomorrow the we can go home to Tyler on Friday! Oh, how I pray the echo is stable so we can go home! If it is then Josh and I will "room in" at the hospital tomorrow night and spend the night together with Holt to make sure we are comfortable with the medications and feedings before we head home. Once we are in Tyler we will see our pediatrician on Monday and come back to Dallas on Wednesday for a follow up with the cardiologists and then we will be seen weekly in Tyler there after that.

So the new question is what does the future hold? The doctors have said they can not be more pleased with how well Holt is doing. I can't help but be amazed with the mercy God has shown on our family. He has answered our prayers and has done "more then we can ask or imagine".  The Norwood procedure is off the table for us. His left ventricle is going to recover and has recovered for that matter. We were told that the heart cath was only a temporary fix, but temporary could be 4 months or it could be 5-10 years. Holt will have to have more intervention at some point in his life but our prayer is that we can wait until he's much older. The procedure now that they are talking to us about is called the Ross procedure. They haven't gone into much details about it but just wanted to put the name in our brains. From what I understand it's basically where they replace the aortic valve with a pulmonary valve and use a mechanical valve as a replacement for the pulmonary valve. And surprisingly it's a much simpler surgery. Of course we will be given more information when it's time for the procedure. I am just so thankful that we are able to take him home and get him as old as we possibly can before the surgery. 
We will have weekly follow ups to the cardiologist for a long time, then they will lengthen our leash to 2 weeks and someday a long time from now I was told that one of the cardiologist will get brave enough to let us go for one month before coming back for a follow up. I told them I am ok with coming weekly! So between them and our pediatrician it sounds like we will be in the doctors offices a lot! But I don't even mind because we will be home!

I feel like this chapter in our journey is closing and another one is beginning. It has been a long time coming and I know it will take sometime to process all that has really happened. I feel like the last couple of weeks I have been on autopilot. Just doing what we can to make it through. I am so ready to be in my own home and get into a routine, to find our new normal.

Today on my way to the hospital I thought what a sweet day it is going to be when Holt plays his first sport. It brought a tear to my eye thinking about how faithful God has been through this whole process and how far we've come. I now understand more " I can do all things through Christ who strengthens me" I know that it is nothing but the strength of God that has gotten us through all of this.

 I feel like I am so scatterbrained these days and I'm sure it's reflects in my writing. My brain hurts. I am so overwhelmed by the love and support we have received during the 12 weeks we have been in the hospital. I know we owe so many people "thank yous".  I've tried to keep up with my thank you notes but I've decided I am not superwomen and I am learning I can only do so much with my time during the day. Please know that Josh and I are so very grateful for the encouragement, love and support that was poured on us. We have truly seen Jesus in so many ways. He has provided in ways I can't even begin to list. Thank you for being Jesus to us!

I can't wait for the day when we have the conversation with Holt about his heart. I can't wait to tell him how God healed his heart. I can't wait to tell him about all the love we received while we were in the hospital and how many people prayed for him. I can't wait to tell him that God has such big plans for his life.

I will update when I can about our transition home and how we are adjusting to our new normal. Please pray for us as we do make our way home. It comes with mixed emotions. I think taking him home is going to be another test of our trust in the Lord. We won't have any monitors telling us his heart is still beating. We just have to trust that his heart is still beating without hearing it. I've gotten so use to a machine. It's going to be an adjustment for sure to not have a monitor around.

Thank you for your prayers, I know the Lord has answered our prayer and I will forever be thankful for the miracle he has preformed.

To God be the glory for great things he has done!