I've got a lot of info here and I'm probably going to butcher it but please bear with me. We were able to talk to a doctor at our visit this evening. We also talked to a cardiologist. Right now we know that Gaines has pulmonary hypertension and that today it seems to be getting better. Because of his blood gas issues yesterday, they scheduled an echo of his heart today. Even though his blood gases today are better (in the normal range I believe) they went ahead with the echo...which is where the cardiologist comes in.
The cardiologist told us first about two small holes in the lower part of his heart. Obviously they are a concern because they are in his heart but they aren't bothering him...its just something they will watch over time to see if they close (this seems to be common in preemies). The big question mark comes in on a possible narrowing of his aorta (aorta delivers blood to his body). Right now the cardiologist cannot tell if its narrowing or not...he couldn't even give me odds on whether or not he thought one way or the other. It's hard for him to tell because Gaines' PDA (valve that all babies have...full term babies closes on its own...preemies sometimes need meds to close it) is very large and it makes it hard to tell whether or not the aorta is narrowing. Over the next few days as his PDA starts to close and his pulmonary hypertension starts to get better (hopefully) we will discover whether or not his aorta is narrowing.
If the aorta is narrowing, this would mean his body would not be getting adequate blood flow. The cardiologist would give Gaines medicine to keep his PDA open (allowing more blood flow) until surgery could be performed. The surgery would be performed as soon as possible (within a few days from today) at Children's Hospital in DC. Basically, within the next 48-72 hours we should find out if Gaines has to have heart surgery.
When we visited this evening, Gaines' sats looked good and his oxygen was at 40%. The doctors had weaned his nitric oxide down to a level 10 (from 15) and even lowered his oscillator settings. Thankfully, all of these are signs of his pulmonary hypertension getting better. However, as the pulmonary hypertension gets better whether or not his aorta is narrowing becomes more evident. We are very fortunate that they are monitoring this. If they were not aware of the situation and Gaines does have a narrowing aorta he would have all of a sudden gotten VERY sick, VERY quickly. Praise God the doctors are able to be proactive in this situation rather than reactive.
Before we got this report we visited this afternoon. I don't know exactly what it was but I got overwhelmed again. I cried and cried and cried but couldn't make sense of exactly why. I wanted to hold my baby, I miss Reed, I miss home, I miss friends and family, I miss work, I miss my normal life. It gets so overwhelming at times. A little while after I straightened up Beau made me listen to the words of a song he's come across somewhere along the way. Some of you will probably recognize it but it's changed my outlook on things. At least for today but I hope I can keep it in mind on the hard days (which seem to be all of them lately). Really I think its an attitude I'm striving for. I'm posting some of the lyrics below.
Maybe since my life was changed
Long before these rainy days
It's never really ever crossed my mind
To turn my back on you, oh Lord
My only shelter from the storm
But instead I draw closer through these times
So I pray
Bring me joy, bring me peace
Bring the chance to be free
Bring me anything that brings
You glory And I know there'll
be days When this life brings me pain
But if that's what it takes to
praise You Jesus, bring the rain.
I am yours regardless of the clouds that may
loom above because you are much greater than
my pain you who made a way for me suffering
your destiny so tell me whats a little rain
Please continue to keep our family in your prayers. Specifically for Gaines' lungs to continue to improve and for no narrowing of his aorta. Pray for comfort and strength for him to keep fighting and comfort and strength for Beau and me to keep going. I cannot put into words how hard it is to deal with all of this away from our support back home and to be away from Reed. I have two sweet boys and I can't be with either of them.
Love to all,