"Could be worse"

Powered up my ipod today for the 1st time in so long and the 1st song to come on was the very beginning of "Our God" How fitting, "Our God is greater, Our God is stronger, God you are HIGHER than any other, Our God is HEALER AWESOME AND POWER Our God!"


 
My wonderful friend Megan sent me a few passages from her devotion today:
our sovereign Lord, my confidence since my youth~ Psalms 71:5
so don't fear, for I am with you, do not be dismayed, for I am your God. ~ Isaiah 41:10
Blessed is the man who trusts in the Lord, whose confidence is in him ~ Jeremiah 17:7
Trust in him at all times, O people; pour out your hearts to him, for God is your refuge! Psalms 62:8
May the God of hope fill you with joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit ! Romans 15:13

I just updated Gavin's blog Sunday night after his 1st birthday party, kind of kicking myself for slacking a bit in the updating however he has been doing so great there really wasn't news to tell. Well all things changed...

He had been under the weather since his birthday Friday, April 29th. The previous week he had become picking eating and sleeping often, sleeping in until 10-11,( you know I wasn't complaining) Waking up with puffy eyes, but over all happy go lucky Gavin. Sunday was his bday party. Needless to say everyone partied but him. He was so pitiful, he slept the entire time. We took him the a local ER, they said he was slightly dehydrated. He had plenty to drink Saturday and Sunday, yet no urination. They weren't alarmed. (DON'T ASK MY WHY) Cold hands and feet, clammy skin, sweaty, pale and SLEEPY. Discharged Monday morning around 2:30am we went home and went to bed.



Monday afternoon, I thought that nothing added up. No fever, no pee, no crying, no eating, no dirty diapers, just sleep and sweat and cold and no fever. "What is wrong with him?" I asked, while staring at him on the floor, looking so pitiful, sleeping still. Something dawned on me, it was like a light bulb went off. I heard, "He has Congestive Heart Failure" No, seriously? 1 year after his surgery? His anniversary is this Friday, can that be possible. I read my handbook given to us by U of M, it was clear as could be. Gavin was a checklist of symptoms. He had 95% of the symptoms. Daddy and I took him to U of M ER.

I can not explain the comfort and happiness we felt being there. Yes, it was sad and we were scared but so relieved to be here where we knew we would get answers and he would get the care he needed.
The little guy was retaining fluid, yet he was intravascular dehydrated. They gave him a chest xray and stomach xray( to check for obstruction of the bowl ), tired to take blood labs but he was so dehydrated and swollen that his vein were disappearing, once poked here or there he wasn't giving up any blood. I've never seen nurses struggle so much to get drops of blood from a someone. His poor little limbs, hands and feet were so puffy/swollen.  He came back and they gave him an echo. Gavin layed there as still as can be for an 80min echo. There was the answer. He had stenosis( narrowing) of the pulmonary arteries, his Right ventricle was dilated, not pumping well at all, working extremely hard.



Echo in the U of M ER. Answers to so many questions. A 12month old does not sit stil for a min. He didnt move for over an hour while they looked at his heart. We are so proud of you Gavin.

After  evaluation a heart cath is ordered for sometime this afternoon (Tuesday) to look at the conduit that is now to narrow/ tight for his body. This is not a defect of the conduit, it's just how is body has healed.  There is obstruction in the bottom of the conduit, the valve and it happens. They are hoping by the cath, that a balloon or stint will open the narrowing and to investigate the pulmonary arteries and take pressure readings and intervine if needed there.

Surgery is definitely in his near future. Closer than we all had prepared for.  The news was scary and it still. I immediately fell relieved that we were here. Some people don't believe that God can talk to you. I hasn't happened to my allot but I can say that I am confident that he spoke to me yesterday. No, it's not rumbling voice that I hear telling me what's wrong with my son, in a deep voice, but more like a clear statement, direct and to the point. After asking to myself, "What is wrong with him?" It clicked, I clearly heard, He has Congestive Heart Failure. Complete clairity. No hesitation, no questions. just answers. I got my handbook, read the symptoms, called U of M, made plans to have a cardiac nurse call back, I immediately started packing, with out thinking. We decided we just need to go, they are going to send us up there anyway and even if they said to just see, we were still driving out there regardless, so here we arel. Waiting for news weather or not he's going to need surgery this week ?

I thank God that we came and he received these test. His condition since we've been here less than 24 hrs has rapidly decreased. God led us here! His Will, will be done. 

Is it wrong to pray that his "Will" is to heal and allow us to keep Gavin longer? It feels like it's wrong. Our faith is in him, Our God, Our Healer.

Our baby boy is "1"

Gavin turned "1" on April 29th. Friday was a day of recollection and I am sure this Friday, May 6th, marking 1 year from his first open heart surgery will be the same.  I'm sure most parents can relate, the day he was born was one of the happiest and scariest times of our lives. What a mix of emotions that day and days that followed brought us.  I still don't think we have processed it all. At times, thinking of everything feels quite overwhelming. The first month of Gavin's was a whirlwind of emotions, crazy emotions.

This year has been simply amazing in the recovery, growth and development of Gavin. He is right on key with his milestones. His weight and height are right in line with where they are suppose to be. Needless to say, Gavin has completely made up for the time he wouldn't eat. This little boy eats everything! He is extremely healthy, active and very bright. He currently weights 24 lbs and is 30 inches tall. Although he hasn't taken his first steps, we can tell they are just around the corner. Gavin has been pulling himself up and standing "look mom no hanging" for the past 2 weeks. We will be chasing after our little daredevil soon enough. 

Gavin has his 1 year sedated echo scheduled for June 9th. He never did have a 4th swallow study. We have however, taken it upon ourselves to greatly reduce the thicker we use to, well nothing. He seems to be doing really well with the normal consistency of his formula, juice and food. 

Happy Birthday to our sweet baby boy! We love you so much and we couldn't be more proud of how far you've come.  

On with a "New Year"

As you can imagine, the holidays in our house this year were full of excitement. Having Gavin with us made everything all the more special.  The season was full of so many firsts for the little guy.

Off to a great start!

Gavin started the New Year off with a fantastic set of dr's appointments.  January 6th, he met with his cardiologist. What can I say, other than it was sooooo uneventful!!!

Heat Week 2011

Come on! Lets go bowling!

We are hosting our 1st Annual bowling fundraiser during Heart Week 2011, raising funds for research and for the Congenital heart center at Mott Childrens hospital.

On thickener for a while longer...

Gavin's 3rd swallow study was Friday and he did wonderful with the cereal, pears and thickened formula. When the therapist gave him the regular constancy formula, little bugger aspirated. Oh well, he will remain on the simply thick for the next 2 months, it helps with his reflux anyway. Really, if that is all that he is experiencing right now, aspiration, I will take it. We are truly blessed with his surgery, recovery and good health.

I also met with his dietitian.  Being that he is still on the low end of the weight spectrum, he still needs the increased calorie formula but my question was how to increase the calories in his cereal and fruit or would it be enough without extra calories. The dietitian recommended we use cooking oil the fortify his foods. Heart healthy cooking oils of course, IE olive, canola and flax seed oil.  A tsp. of oil is 45 calories, so she said to start with a 1/2 tsp. in each cereal feeding, that will give him a great dose of Omega-3 and calories. I'm going with flax seed oil. The olive oil has to much of it's own taste and well, flax seed is just plain better for you than canola. She also suggested brown sugar for the sweeter foods, but for now I'm going to pass on the added sugars. If Gavin is anything like his father, he will have a highly developed sweet tooth ( look at how sweet mommy is) and doesn't need any help in that category.

Gavin is eating his solids like a champ! Overall, Friday's visits went well and we don't return to U of M until January.  He has his next pediatrician appointment this Friday. Although his weight is the major concern right now, at least he is gaining and other than that, just prepare him for more shots. :(

Just a Note