What a week. I mean, this time last week I was home from a day of saying goodbye to my mimi as she entered heaven that morning. The next few days were a whirlwind of family, plans, meals, arrangements, services, etc. A day of partial rest and then the next day I left for Ft. Worth. I made it to Wichita Falls on Thursday evening and Staci and I ate at Genghis Grill. :) be jealous. so yummy! We rested and got up early for Ft Worth on Friday. We made it in great time and even had no trouble with parking, finding our way around and getting where we needed to be. We're a good team. :) We were even early. We got to the Echo appt and things went fine. Dr. Roten, our cardiologist confirmed the HPLH diagnosis, which I expected. She said that everything looks routine at this point. She was able to give me a decent outlook on the process we will go through from birth through the second surgery. She expained just how serious this surgery will be and all the recovery, etc. She didn't sugar coat any of it, but she was go gentle in the way she explained it all. I was so thankful for such detail and for, as hard as it was to hear, all the difficult details as well. No parent wants to hear that their baby will have open heart surgery, no parent wants to have to watch their little one suffer, fight for their life as they recover from that surgery and not be able to "do" anything. I won't go through the whole list of details and process that will occur, because you will live it with us as it happens. For now, I can tell you that the first month of his life is going to be a WILD ride. Lots of things happen in the first month, from birth, surgery, recovery, feedings, etc. We will come home at some point after that month and we will have a whole new lifestyle that includes daily O2 saturation checks, weight check, feedings with most likely a button for at least the first 6 months of life, possibly a year, depending on how he does learning a bottle. There are lots of little details that we will just come to at that point in his life. We will most likely deliver at 39 weeks, he will end up having his surgery within 3-4 days of his birth. Recovery in the hospital will be at a minimum a month. My recovery, I believe will be much easier than with Ava. So far I have had great blood pressure, little to no swelling and little weight gain at all. so happy! I think my recovery will be remarkably easier and for that I am thankful. I can be all I can be for my baby boy.
Nick, Ava and I are going to be going down to Ft. Worth together for the next appt. We will meet the surgeon, Dr. Tam and see Dr. Roten again as well as my doctor, Dr. Howard. We will get a tour of the hospitals, have more questions answered and discuss when I will be staying in ft. worth for good before delivery. Most likely, I will be going down to stay at around 36 weeks. He'll be delivered at 39 weeks, so not too much of a stay before he's born. Dr. Roten's office is calling the Ronald McDonald house for us to get us on the waiting list so that we will have a "home" away from home for awhile. We will be staying with some sweet family before he is born and I know some of our family from here will stay with them as well, when we get a place at the RMcD House. I can stay at the NICU as much as I want, but they suggest, for obvious reasons, to be close by but at a place where I can get away and not be at the hospital sometimes.
So many new details, information and things to anticipate. I have been able to go through things in my head and digest most of the information we were given this last visit. I struggle sometimes with the "why us", "why my child" "why me", why why why Lord. What is it that we did that would allowus to have to deal with this and yet in the same breath, I praise Him for finding Nick and myself worthy of parenting such an amazing little boy, who has already touched many lives. I struggle with doubt and wondering if I will be strong enough to make it through all of this, will I be able to be a good mommy to both of these precious babies with all the technical stuff we will have to take care of? I could go on and on about all the doubts and questions, but I keep finding that God doesn't have answers for all my questions right now, but he has lessons to be learned in all of them. I WILL learn from this. Noah will not remember a thing about this, but he will have a mommy throughout his life who will be better and empowered through this experience. Nothing about this road we are on will be easy, but it will all be worth it. At some point in our life, each of the hurdles we are facing will be proven worth it, by the knowledge, experience and lessons we will have gained. I know I am scared at times and constantly nervous about all the little things I can't control, but I am finding comfort in the fact that I have never been in a better place with Lord in my life. No doubt. I am relying on him, seeking him and asking for all I can get from him to learn and gain His peace in all of this. I know he loves me to seek him and I love to be close to him and feel his comfort.
Here are some things I ask for prayers for.
continued health for myself and noah.
nick to be able to get off work when needed at various times.
for Ava to continue to develope and grow wonderfully- even through all the craziness.
travel and time spent in ft worth before Noah's birth, for Ava and I. For nick as he is back here at home during that time.
For Dr. Tam (surgeon) and Dr. Roten (cardiologist) Dr. Howard (OBgyn) staff of both hospitals.
That noah's body will be devinely prepared and ready for all the turmoil of surgery and recovery.
continued wisdom and peace.
finances, obviously. haha
For all the people who have and will be touched by our son Noah and his testimony. May God be glorified and honored through Noah and our family. May people come to know Christ through our son's journey. Noah means "peace" and even when things get tough and hard to swallow, God has covered my mind and heart with peace. I know his name is no accident.
Thank you all for continuing on this journey with us. Your prayers and support make this bearable. I still can't believe this is happening to us, it all still seems surreal in many ways, but I know that it will all become very real very soon.
love you all. Thank you so much again.
shaina
