So far things still seem to be the same with Gaines. His blood gases are ok...still not great but ok and his oxygen is still around 40%. I think they plan to just try and maintain things the next few days while they try and close the PDA. I pray that is closes with the medication and that the holes (VSDs) don't present a problem. I'm pretty apprehensive about this step we are on now because it could open the door to new issues with his heart (the VSDs) but I'm trying to remember that it could also be just what he needs. It could be a big step for him.
I tell you, that was a hard conversation to have yesterday. There are just so many times you can hear the words heart failure in reference to your child. They kept mentioning problems that could lead to heart failure and I finally had to stop them and have them explain heart failure to us. To me, heart failure is the end of the road...your heart fails and stops. Thankfully, heart failure can include many things and is apparently treatable. Still not something I want to deal with but at least its something that could be dealt with should the need arise. I pray that it doesn't.
Today is better but last night was a little bit of a rough night for me. I'd been fighting back the tears all day but finally right before bed I couldn't hold them back anymore. In my head I just kept thinking, I can't go home without him. Thankfully, I have an awesome husband that assured me we weren't. We don't know how long our road will be but one day, we will take Gaines home with us to be a family. I have never wanted anything more in my life.
On a lighter note, we just ran some normal errands. We found a regular grocery store and picked up a few things. In the midst of this craziness, doing normal things helps us keep our sanity. Also, we got several cards and packages yesterday. We are so thankful for them as they are such a distraction from what our life has become. We got one package from a lady that we don't know in Texas. There were several cards that kids in her church made for us and I cannot tell you how great it was. Several drew little mazes for us to do in our spare time...I thought they were awesome. I was able to genuinely laugh and relax for a minute.
Please keep our family in your prayers. Please pray that Gaines' PDA closes with the medication and that the VSDs do not present a problem. Also, please pray that his lungs continue to get stronger.
Love to all,
Brittany
6 comments:
Still praying for all of you! Especially praying for Gaines' little heart! I'm glad you found a real grocery store (there aren't many of those around here). I think of you guys a lot, especially when I'm around the hospital. Please let me know if you need anything, even if it's just to find a new place to get a sandwich.
Brittany and Beau--
Although I can't imagine the feelings and fears you must have now, I do understand what it's like to be told your child might need heart surgery. When Annie was 9 months old (right before Christmas) we learned that she had a large VSD that had been masked when they did her newborn heart echo.
We made the mistake after seeing the cardiologist of reading the report from radiology. Words like "enlarged" ventricle, "boot-shaped heart," possible "heart failure" jumped out at us. As we walked from radiology back to the cardiologist, we felt like our world was crashing down around us. Fortunately, God gave us a doctor who calmed our fears and explained that medical professionals often analyze tests to include all possible outcomes -- including the worst and most rare.
Of course his assurances that heart surgery is routine and that children recover quickly and live full lives did not completely ease our fears. We prayed, worried and cried when we had to let the doctors take her to surgery. In the end, though, Annie was okay. She came home after just 24 hours in ICU and another 24 hours in the nursery, and she never needed anything for pain but regular children's Tylenol. There were a lot of other antibiotics and diuretics that she had to take for a while, but her recovery was much faster and easier than we could have ever imagined. In fact, I often say that Annie is much tougher than her Daddy. She's had five surgeries in six years (most minor), and is getting ear tubes again in June, but she is truly a gift from God.
I do pray that God will allow Gaines' PDA to close without surgery, and I pray that he grants you the peace that passes understanding.
When times are tough and it seems like each day brings a new challenge, it is hard to stay encouraged. What always helped us get through things with Annie was remembering that God has always taken care of us, and he will continue to do so -- no matter what happens.
I know you are both praying, faithful Christians and each probably has favorite scriptures. For me, Romans 8 always helps; for Laurie, it's Philippians 4.
Your remain in our thoughts and prayers.
Jeff and Laurie
One of my daughters (a triplet born at 30 weeks gestation) also had VSD. The doctors compared her heart to swiss cheese and were certain her many, small holes would never close. And although she was not symptomatic, she was followed closely by a cardiologist who continued to tell us her VSD would be something to be monitored for years to come. We prayed. We prayed. We prayed. She seemed fine, but still, a heart condition doesn't settle well. Nobody was more surprised than her cardiologist when at a routine check up at around 8 months old EVERY hole had closed. There was no sign whatsoever of VSD or of a heart murmur. I posted about it at http://www.thegrowingcunninghams.com/january.htm. For your little Gaines, we will pray.
The Cunninghams
www.thegrowingcunninghams.com
Brittany, as a fellow Mama, my heart just feels so burdened for all you are going through right now. I am so thankful the Our Heavenly Father has blessed you with Beau, and with little bits of sunshine amidst the storm. Praying for you a lot today (and, of course Gaines!!!).
Ruthie
You are in my prayers today. May God grant you His peace.
We are still praying in central Virginia. He hears your groans and sighs and is walking with you.
Post a Comment