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Showing posts with label Kaleb Heart Condition Updates. Show all posts
Showing posts with label Kaleb Heart Condition Updates. Show all posts
A long overdue update! I've had a lot of prioritizing opportunities the last 9 months during this incredible transition we are going through so that's why my blog has been neglected. So, here's various updates on the Morris household since I'm feeling better these days:
Baby bump:
23 weeks
25 weeks
28 weeks
30 weeks
almost 33 weeks
36 weeks
Overall pregnancy health:
My body is complicated as it is and then to add pregnancy it seems to get more complicated!! I have to admit this was the main reason I didn't want to have any more kids. Pregnancy is quite an adjustment and not very fun for me but as I near the end, I'm praying for renewed perspective and strength to do it again. Yes, we desire to have at least one more after this if that's what the Lord desires. Nothing I deal with is life threatening, just annoying. Here's what I've learned about my overall health during pregnancy:
*Vericose veins get worse with each one
* Swimming is an incredible way to exercise if you have vericose vein trouble, leg pressure and swelling. Even getting in the pool once a week made a huge difference in how I felt. At 24 weeks I really started feeling poorly with these symptoms but they didn't get worse like I fear simply because walking and swimming is quite helpful. I'm thankful for the 92 degree pool we have access to at Heritage Pointe here in Warren. We get to swim with the elderly on a regular basis and they enjoy watching the boys swim as well.
*I have underactive thyroid once I hit 20ish weeks. The symptoms I have....unexplained weight gain, complete exhaustion (when I should be experiencing the boost of energy) and sleepless nights were the same things I felt during my 2nd trimester with my boys but my thyroid was never checked. I have a feeling it's a common occurence for me during pregnancy that was finally diagnosed this time. After 4 weeks of taking compounded therapy I still wasn't feeling like I felt much better until I combined the meds with a gluten free diet.
*I recently learned that gluten attacks the thyroid and that it would be best for me to be gluten free. After 4 weeks of being on a gluten free diet I started to finally notice a difference in how I felt. I suddenly have more energy (even though my body has a hard time keeping up, the "energy" I still feel is so much different from the complete exhaustion I dealt with daily). The true test was when I recently cheated due to being at a social gathering that didn't offer anything gluten free. Within the hour I was completely exhausted for the next 24 hours and felt nauseous when I went to bed. Something else I've noticed in the last 2 weeks is that even if I'm tired from a busy day, I haven't felt sick when I go to bed. I was thinking all along it was "morning sickness" just lingering all this time that would come up once a week or so, but it was probably due to what I was eating that day. I would say I was 70% gluten free before, eating gluten free at home but on the weekends when we'd be out I would eat whatever. I've come to the conclusion my body just functions much better on a gluten free diet and it simply is not worth the exhuastion and feeling sick to cheat...so it looks like it will be a lifestyle change for me. My family needs me to be well and the best I can be so it will be worth the change. It's not easy, though!
*By 36 weeks I officially lost my ankles. :)
The boys:
We finished school at the beginning of May and had a pizza and icecream party at home on the evening of the last day.
We had a tornado warning and had to take cover in the basement. The boys are laying on cardboard under blankets while we wait the storm out.
Isaac has been playing baseball and Kaleb has enjoyed soccer. It has definitely kept us busy this spring!! We also got great news that Kaleb's heart's condition is still mild and we get to keep our yearly check up appointments for now.
The baby's room has been under construction:
A nice before of the pink room with unicorn border
First project was to replace the 60 year old windows
It's time to get rid of the junk!
The wallpaper took a couple layers of paint off so Jeff had to mud
A free dresser we've had for a couple years wanting to refinish it and use it for something
Perfect for baby's room!
Finished paint
Isaac helping with the crib construction
That's all that we will do for now. Decorating will take place later since baby girl won't officially move into her room until we are ready to put her alone. She'll be sleeping in our room for several months.
And lastly, Jeff and I got a quick date in to celebrate our 11th anniversary!
Our sweet and happy Kaleb winning some tickets at Great Wolf Lodge this past spring break trip.
Yesterday was our yearly visit for Kaleb to see his Cardiologist. It was 6 years ago that we got the devastating news that our baby had a heart defect. We really had no idea what to expect. Worst case scenario we were told was that Kaleb would need surgery before he was a year old. However, surgery before a year old was more dangerous than waiting it out until he had grown a little because they could over correct his valve which would require a valve replacement. The thought of numerous life threatening surgeries for our baby was more than we could carry. As I look back over the last six years, I see that we are blessed beyond anything I could have imagined walking this road.
Here are our miracles in this journey:
* Kaleb's condition improved only through the power of our God who heals. He has never had surgery and his diagnosis went from moderately severe as a newborn to mild today! We were told at our first visit he would only get worse. At every visit in the first year the doctor kept telling us we were not out of the woods because he would most likely have surgery before he was a year old. Praise God he never did!
*Kaleb plays soccer, runs around with his brother and dad and so far has led a life of normalcy. He is so full of life and such a joy in our lives!
*The peace we've received through this journey is also a blessing and miracle. We've had to lay his life before the Lord and live one day at a time.
*He went from frequent Cardiology visits (probably 4 or 5 in the first year) to once a year!
Thank you to all of you who have prayed with and for us. We couldn't walk this alone and thankful to have so many to call on when we need prayer. We have no idea what Kaleb's future looks like but we pray that his healing continues and the Lord would use his story to glorify and bring honor to Himself.
Today we learned that Kaleb’s body this past year is growing at a pace that allows his heart valve to keep up.His numbers fluctuate as he grows.If he goes through a growth spurt the numbers can rise.Last year his number was 25 (40 is when we begin talking surgery) and today we found out it is sitting at 16!!We get to wait out another year!! Here is the medical info about Kaleb's condition:
"Aortic Stenosis refers to a condition that causes obstruction to blood flow between the left ventricle and the aorta. There are a variety of causes, including muscular obstruction below the aortic valve, obstruction at the valve itself, or aortic narrowing immediately above the valve.
The most common form of aortic stenosis is obstruction at the valve itself, referred to as aortic valvar stenosis, which is the subject of this section.
The normal aortic valve consists of three thin and pliable valve leaflets. When the left ventricle ejects blood into the aorta, normal aortic valve leaflets spread apart easily and cause no obstruction to outflow of the blood from the heart.
Aortic stenosis occurs when abnormalities of the aortic valve lead to narrowing and obstruction between the left ventricle and the aorta.
The most common abnormality occurs when the aortic valve has only two (instead of three) leaflets. This is called a bicuspid aortic valve (or BAV). Often the valve leaflets are thickened and less pliable than normal, and the lines of separation between them (or "commissures") are fused together to a variable degree. When the aortic valve does not open freely, the left ventricle must work harder to eject blood into the aorta.
To compensate for this additional workload, the muscle of the left ventricle (the myocardium) gradually thickens to provide additional strength to left ventricular ejection. The increased left ventricular muscle, also known as hypertrophy, is rarely a problem itself. Instead, hypertrophy is an indication of significant valve obstruction.
When the aortic valve is severely obstructed, the left ventricular muscle may not be able to compensate satisfactorily. In these very severe, but fortunately rare, instances the left ventricle may fail to pump blood effectively and the patient may develop cardiac failure. If this occurs it is almost always in a newborn infant with very severe valve obstruction. Heart failure rarely occurs later in childhood."
As always, the cardiologist always goes into detail about what could happen later on.Today he was telling me about 2 different kinds of valve replacements.One type would use the pulmonary valve for the aortic valve which means he would have 2 valve replacements but it’s the preferred method because then the pulmonary valve would grow with the body.I’m not sure what they would use for the pulmonary replacement, though.So much info to digest at times!This procedure can only be done up until 10 years of age.RileyHospital is known as the best in the country for doing this procedure.The other option is a mechanical valve and that would require blood thinners the rest of his life.However, he did conclude with, “I hope we don’t have to do either…”At the same time I’m praying, “Lord, I pray we never have to make this decision….”
So, specifically, you can pray that Kaleb will never have to have open heart surgery.If we get to that point, there will be lots of life changes for him and us.We would love to have a full and complete recovery but we are happy to keep doing what we are doing so that he can still live a normal life.