Tuesday, April 28, 2009

A Sharp Turn On The Roller Coaster

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,

Brittany

32 comments:

Grammy Jane said...

Hange in there. I know it must be hard and it's okay to cry (and cry and cry). God loves you and is with you every step of this journey. Even right this very minute I'm praying for you and Beau and Reed and preciouis little Gaines. It must really be hard not to be able to touch that little one. Maybe it won't be too long until you can. I'm asking God to comfort your heart and give you a good night's rest tonight.

Monica @ Writer Chic said...

Praying in Nashville.

christicave said...

My heart aches for you! I can only imagine how it must feel to be away from home, and your other baby!

I pray that God hold you so tight that you feel Him and give you peace that passes all understanding! I pray that you are so peaceful in these next days that you make people wonder around you and you are able to point it all to God!

God Hold these dear brothers and sister in Christ. Heal these problems in Gaines. I pray that the doctors are shaking their heads in wonder because Gaines is PERFECT!

Amen and amen!

Christi in Mississippi

christicave@comcast.net

. said...

~Still praying for your family~

~B in Indiana

Sarah said...

Praying HARD for you from across the street.

Melody said...

I'm praying for you, and for your little guy!! I PRAY he does not need surgery! I think your poor nerves and faith have been put to the test enough lately. ;) ((hugs)) I am so sorry you have been having such a hard time with everything- there is not a mom out there who couldn't put herself in your shoes and completely understand your frustrations and your tears. I am praying each day gets better!!

Aubs said...

My heart just hurts for you. But girl, don't be ashamed of those tears! God gave you tears and you have to allow yourself to process all those emotions....there is no right or wrong way to feel or to handle all that you are facing right now!

I am praying for You, Beau, Reed, Gaines, the medical staff caring for Gaines, and for your families back home who are caring for Reed and missing you guys. I am praying for peace, comfort, healing, and strength for all of you!

Hugs & Blessings~
Aubrey in Pensacola, FL

Casey said...

I actually heard that song a day or so ago and thought of ya'll.

We are praying!

Gretta said...

Girl don't be ashamed of those crying times and questioning. God knows and He is still holding you in his arms through it all. I am praying that Gaines does not require heart surgery. We are praying for you daily!

MomMom said...

You're going through normal emotions so don't think there's anything wrong with you. You've been away from home and your little (big) boy and everything familiar and now you're having to deal with your sweet newest little boy in NICU while you're still dealing with the effects of giving birth to him. I wrote you earlier about our nephew who weighed 1 lb. 10 oz. and is now a freshman in college. He, of course, had an open PDA and even had to have it surgically closed but did fine. All of these things that come up DAILY in the NICU are so scary but just normal for days in the life of a preemie. We'll keep praying for Gaines to continue to improve and for God to give you peace and comfort in a very difficult situation. LZ7780@cox.net

Amy said...

Thanking the Lord with you that the potential heart problem has been spotted early and will be watched. I know over and over again we saw in our son's 'medical journey' things that could not be explained medically or were timed just right, and ALL of this was evidence of God's goodness. He is so good, and he is bigger than we can ever imagine.
I hope you know that even through your 'bad days' and the times you cry or question, the fact that you trust God and honor him is a blessing and witness to so many people. And I say that not to put pressure on you like you have to always live up to that (because it is impossible!) but to try to encourage you.

We are praying for Gaines and for your whole family!

Marva said...

Praying for you still, in Alabama! Sending hugs too. Hang in there! Blessings!

Lesley said...

I was wondering if the 'possible' narrowing of the aorta was due to the early delivery or would he have had it anyway had he been born full term?

Stacy Brown said...

Oh Brittany, my heart goes out to you. The lyrics are beautiful and just perfect. Hang in there. Be strong and we are praying for you in Iowa!

Stephanie said...

Praying for your entire family tonight!!!

Julie said...

I'm praying that you and Beau will continue to find strength in the Lord during this 'roller coaster' ride.

I lift my eyes to the hills-where does my help come from? My help comes from the LORD, the Maker of heaven and earth. Psalm 121:1-2

Praying for Gaines!!
Julie(Kelley)Hardy

Billy Irvin said...

Beau & Brittany

Please know your First Baptist Church family is praying for you and your boys. We pray that you feel the great promise of Isaiah 41:10.. "Do not fear, for I am with you; Do not anxiously look about you, for I am your God. I will strengthen you, surely I will help you, surely I will uphold you with My righteous right hand."

Praying you feel God's hand of strength and peace as we support you in prayer from Montgomery.

Billy Irvin

Ruthie said...

Dear Brittany and Beau,

My heart is heavy for all you are going through. I love that song and what it means. I am well aquainted with "rain" and having to work hard to let it bring God Glory rather than making me angry, despondant and bitter. It is so hard, and I'll be praying that God is so near as you keep walking... in the rain. Praying for both of your boys tonight too.

Ruthie

KW said...

My heart breaks for you Brittany and Beau! I am praying for Gaines strength and comfort as well as for your strength in knowing that Gaines is being touched by Him when you can not physically comfort him.
Brittany, the post about the area of DC and the people made me laugh. I lived there right out of college and was actually hospitalized in the same hospital that you and Gaines are in. I can relate to "how the southern girl can feel so out of place". :)
I always like to remind myself of these words when wondering why God chooses certain paths for me in life "The will of God will never take where the grace of God will not protect you." He is protecting you and Gaines. Stay strong and keep the tears coming... they are healthy.

Megan said...

I have been following your story since a few days into your hospitalization.

But I guess I've been away for a little while because I just now read about Gaines' birth! Congratulations (belatedly) on his arrival!

I am praying for you from Arkansas, one Mrs. Daniel to another. I can't imagine how hard this is on you and your husband. Gaines sounds like a fighter. May God keep you all in the palm of His hand.

Bekah said...

Always praying for you.

The Ellis Family said...

We love you Beau and Brit! We pray each night that our heavenly Father holds Gaines and comforts him until the day that you both can. Maddie prayed last night for Jesus to please help his heart so that it doesn't hurt anymore. I had a hard time explaining that it doesn't "hurt". The innocence of a 5 year old still amazes me. We know that our God moves mountains, but that his timing is not ours! Gaines is already such a fighter!

Kelly

Until Journey's End said...

Praying for you.

Adrienne said...

This song is on my blog- it's wonderful! I've been where you are in the NICU and it's truly a roller coaster-ups and downs- good days and bad days. I finally had to realize to Let Go and Let God- it was out of my control- I wanted to help my little girl so bad and make her better but until I gave full control over to God, I cried every day. I prayed one night when she was really sick, touch and go, to just give it to God and that I couldn't take all the weight on my shoulders and the next morning she came off of the ventilator. She is a healthy 4 year old now. We found out in Dec. of 08 that our unborn son has Down syndrome and will need heart surgery at 2-4 months so here I am again- waiting to see if he'll have to go to the NICU (he's due in 3 weeks) but I know we can handle it, it's all in Gods control and his hands- not mine. Praying for little Gaines and you all-remember-Let Go, Let God!

Donna Hood said...

God is good - he's holding you all in his hands. And, I firmly believe that little Gaines is feeling your love and knows that Mommy and Daddy are with him. Praying for you in Kentucky.

Marie Harrington said...

Beau and Brittany,
We are praying for you!
Marie Harrington
Carolyn Bryan
Your Montgomery Academy Family

Sarah said...

I'm a displaced Georgia girl living in NYC, and I've been following your blog since the start of this journey. I think about y'all multiple times a day and always send up a little prayer for Gaines' health and strength, peace, and guidance for you and Beau.

I'm not sure if you read any other blogs about micro-preemies, but here are 2 great ones that should give you some hope and wisdom. :)

24-weeker who is now doing great and hopefully going home soon! http://rachaelsupdateblog.blogspot.com/

29-weeker who is also doing fabulously! http://wagnerpdx.blogspot.com/

They've ridden the roller coaster that you're now on so there might be some helpful tidbits. :)

Stay strong and keep faith! Congratulations on your precious little miracle!

~Sarah

Collier Chronicles said...

No great words of wisdom this morning. Only you guys are being prayed over by many and loved by many.

Amanda said...

A sharp turn indeed, perhaps more like the loop the loop or whatever they are called. You are so wise to be thankful that the doctors are being proactive rather than reactive. Brittany my heart breaks for you that you can't be with either of your sweet boys. Cling to Him. He has your whole family in the palm of his hand. My sister sent me this verse when my little girl was in the NICU. I read her all off John chapter 14 one afternoon as I was waiting for them to take her off for her second surgery. When I got to verse 27 (the verse my sister had sent) Cadence opened her eyes and became very alert as if she, too, knew this verse was special and important. "Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid." John 14:27 Still praying.

Jennifer said...

Praying for you..and for Beau..and little Gaines!! Praying for peace that you can't even really understand....

Also - wanted to tell you that you are "in my neck of the woods" and if there is ever anything that I can do to help you while you're here...PLEASE let me know. I would love, too.

Love those lyrics!!

The Stairs Family said...

Hope everything is okay this morning, you usually post by now! I'll keep checking back!

Tamara Ann said...

We've never met, but I want you to know that we are praying for you, your family and most especially Gaines.

My son (almost 7 months old now) was also premature. We were very blessed that after several weeks of bedrest I was able to make it to 35 weeks with him and he only had to spend 8 days in the NICU with (relatively) minor challenges.

I know that it doesn't compare with what you're going through now, but I do know how it feels to see your baby - but not be able to touch him. To want to hold him and not be able to. To worry with every beep and flash on the monitors. But I also know that God can and will work miracles (and He already has in Gaines).

Our family is walking in our local March for Babies this weekend in honor of our son, and I want you to know that as we do we'll be thinking about and praying for Gaines as well.