Tuesday, October 8, 2013
Pediatric Cardiologist
Those were the longest three days of my life. The waiting is horrible.
Jason and I arrived at Wolfson's Hospital and checked in. They were a little surprised to be checking in an adult female to the Children's Hospital but things started to make more sense once they realized the child was still in my belly. The guy that checked me in was named Michael Jackson. I swear you can't make this stuff up. Once checked in we waited. It didn't take long for the nurse to come get us and walked us through to the Children's Heart Hospital part of Wolfson's. We went into the office and filled out paperwork and then Ruby took us to the ultrasound room. We told her about the experience with the ROC and how hard it was to get measurements. Secretly I was hoping she would reassure me everything looked good and it must have just been a problem with ROC. Instead she said "The ROC is usually pretty good about these kinds of things". Hey Ruby ~ Thanks for the punch in the gut! It's bad enough I'm in a pediatric cardiologist office and now you have to go crushing my hopes. I have the fortunate ability to see both sides so I can imagine in her mind she was preparing me for what she must have already seen on the monitor. After all she does this all day and would be able to tell fairly quickly if and where the problem was.
This was another very long ultrasound. Probably not as long as the one at the ROC but almost. I said it before last time, it's fun getting to see your baby but after a while you are ready to stop being looked over. So she scanned and we talked. We talked about all kinds of things but I kept coming back to "we're so hopeful everything will be ok". Jason was quite. I think after the first 30 minutes he got a little bored and started playing a game on his phone.
From what I could see everything looked ok. There were 4 chambers and it appeared blood was flowing through his heart. I'm not ultrasound tech but I was ready to declare my baby fit and healthy. Finally the ultrasound was done and Ruby asked us to wait for the doctor. I hoped we were waiting for good news. About 5 minutes later in walks this young, petite, very cute long blonde haired woman who introduced herself as Dr. Lacey. I think Dr. Lacey is younger than me!
After she introduced herself she said "the ROC seems to think your baby is having a heart issue and I agree. But I think it's more severe than they thought." Wait! What? Did she really just say that? She was armed with pictures and proceeded to show us a "healthy" heart and then showed us a drawing of our baby's heart. All I could see was our baby's heart seemed to be a little smaller in some areas. The next words out of her mouth will live with me forever...
Hypoplastic Left Heart Syndrome
The rest of the conversation was a blur. Jason seemed to be paying much more attention than me. I couldn't even see straight. She explained (from what Jason tells me) our baby's lower left chamber is underdeveloped. It isn't pumping blood properly. This is the chamber that pumps oxygenated blood from the heart to the lungs and brain. This is, like all the rest of them really, a very important piece of the heart puzzle. So many more things she said. Lots of abbreviations. Lots of letters that I still don't understand. At one point Jason had to stop the conversation for a glass of water and to lie down. He literally almost passed out when Dr. Lacey was going over everything.
So, what does this all mean? Dr. Lacey gave us 3 options.
1. Do nothing. If we choose this option Baby Brother will die within the first couple days to weeks of life. So really this is NOT an option. Next please!
2. Put Baby Brother on a heart transplant list. They will keep him alive on IV medicines until a newborn heart becomes available. There is no time frame as basically we would be waiting for another newborn to die. This option makes my heart hurt almost as much as learning my son has a heart problem.
3. A serious of open heart surgeries. 3 parts. The first surgery to take place within 10 days of birth. Could be as early as the day after birth but no more than 10 days after birth. Again, they will keep him alive through IV medicine and then perform the surgery. If all goes well Baby Brother will come home in approx. 6 weeks. That is from surgery. So if surgery happens a week later we are looking at 7 weeks. Then he will need another surgery around 6 months and the final one around 3 years. This is the option we chose.
These surgeries will "Mend His Heart" and in no way heal him or make him whole. He will still need a transplant as he gets older. But the possibilities are so much better for him as an adult receiving a transplant.
We are so scared about this journey and what it means for our family. We've never sat back and asked "Why?" it just doesn't seem to matter why. But I heard a quote at conference this weekend that made me ponder the "Why" of it all. Pres. Eyring recounted a story of a grandmother and her grandson. She was a spiritual giant and the boy decided on a life of crime. On her way to visit him in prison she found herself asking "Why Me?" and said she heard the answer. Simply said she heard the Lord say
"I sent him to you because I knew you could and would love him no matter what"
This is "why" we are being blessed with this little guy. Because we can and will love him. No matter what!
Labels:
Baby Brother,
Cassie,
heart,
HLHS,
Jason
Subscribe to:
Post Comments (Atom)
About title
About
I am a regular everyday wife to Jason and mom to Christian and Georgia on a roller coaster ride. We are overjoyed to be welcoming a 3rd baby into our life. We feel blessed to be given such a special spirit in this 3rd baby. This is our journey to mend our baby's broken heart.
Facebook linl
search title
Blog Archive
- 2014 (3)
-
2013
(35)
- December(6)
- November(11)
-
October(18)
- A New OB
- Questions and Answers
- Pediatric Cardiologist Follow-Up
- Build-A-Bear
- ROC Follow-up
- Blood Account
- In Good Spirits
- Emotions are funny little things...
- We've Got Siblings
- Telling Our Parents
- Georgia and her Baby Brother
- Those Tender Moments
- Finally Some Good News......
- Baby Brother's Daddy
- Hypoplastic Left Heart Syndrome (HLHS)
- Pediatric Cardiologist
- September 23, 2013
- Before September 23, 2013
Archive title
7 comments:
Praying for you here in Alabama!
Thank you Momma! We can use all the prayers we can get :) Love you guys!
Cassie, We totally understand President Eyring's statement. With the Lords blessings your life will continue to be blessed. Baby Brother chose a wonderful family to join and
he knew you would love him and be the best parents and have the sweetest brother and sister. Love and prayers for your family. You are a blessing to many. Your smile and love heals and blesses lives you are unaware of. Faye
In Job 38, Job has the audacity to question the Lord and His decisions for him. The Lord asks Job where he was when the foundations of the earth were set, the boundaries laid, when the cornerstone was placed. "Brace yourself like a man", God says. How dare we ask Him "why?", as if He owes us an explanation.
I also know that the Lord is gracious and merciful, and wants all things to work together for good, to those who love Him. He has you, your family, and your new baby in His loving care. My prayers are for all successful surgeries and proceedures in the coming months, and a complete life for the litttle guy!
Thank you so much Sis. Mandel! We are humbled to be the parents of this sweet spirit. :)
Thank you for taking the time to read our story and comment about Job. I guess it's a good thing I never asked "why" haha ;) In all seriousness, like I said in the post, the "why" doesn't matter. I'm just so humbled to have been chosen the mother of this special little man and as much as it will hurt to watch him go through this I'm sure it will be inspiring in a way I never thought possible. Thank you for the prayers. We really need them!
Crying for you in Minnesota & sending prayers of comfort, peace, and the blessing of good family & friends to be your support team as you work through this experience, keep growing that baby, and have the medical team to make miracles happen (with God's help!). You are a mother warrior & that baby boy is so blessed by you! Thank you for sharing your story (shared by Casey G on FB).
Post a Comment