Asa Update 12/17/2013

Yesterday we had another full day of appointments at Children's Mercy Hospital in Kansas City. As we have had time to reflect on the the days events, we concluded that we left feeling mostly encouraged!
We have one huge praise to share! One of the two openings in Asa's heart is much bigger than last time, which is a very good thing! This allows more of the oxygen-rich and oxygen-poor blood to mix, making his body more oxygenated and less likely to be blue when he is born. This also means that a procedure that would keep that opening in his heart larger, will very likely not be needed now. This is the Lord's work! Praise Him! In fact, Steven remembers the cardiologist saying that we could not have this opening any bigger with a procedure. Thank you Jesus!

While we have this huge praise of God's work, we also have a huge prayer request. There is the potential for another complication in addition to his heart condition. Remember the PDA we asked you all to be praying for? The PDA is the other opening in Asa's heart that will allow blood to mix, and this opening actually is smaller than it was last time. Because the other opening is so much bigger now, it sounds like it is compensating for the fact the PDA opening is now smaller. What is now concerning them about the PDA is that the blood flowing through it is flowing in the wrong direction, which could point to a complication with Asa's lungs. It indicates that his lungs may not be able to function on their own after birth. On its own, a lung complication is something they deal with quite often, however a lung condition combined with a heart condition is much more rare and challenging to deal with. We did not get the sense that this is a life or death problem, but it will make his condition much more serious and complicated should his lungs be abnormal. They would need to get the lungs to a manageable state which could delay his heart surgery, and it would make the heart surgery a more complicated procedure. Asa would also need a lot of support form ventilators and so on, making it very difficult to be able to hold him much and impossible to nurse him. As we sat there listening, It was hard to hear of  potential for yet more problems, but now we are trying to focus on what God has done in making Asa's other opening larger and be thankful. Please be praying that Asa's lungs are perfectly healthy.

Now back to the encouraging part of our visit! The neonatologist, while preparing us for the worst case scenario, mercifully also told us about what the best case scenario could look like! This was so wonderful to hear from a doctors who will be caring for Asa. Assuming that Asa's lungs are healthy and normal, now that this opening is bigger and more blood can mix in Asa's heart he has a great potential to look like a very normal and healthy baby when he is born. The neonatologist explained that when babies are born they are never fully oxygenated right away. They will start at maybe fifty percent oxygenated, and over time reach one hundred percent oxygenation. He said that babies with this heart condition have the potential to reach up to seventy five percent oxygenation, and therefore these babies can look perfectly normal and healthy to a non-medical person. He also was very encouraging about my desire to try and breastfeed as much as possible. He said that if Asa is stable enough, it is possible that I could nurse him eight to ten times a day in the time between his birth and his heart surgery. Praise God for that potential and positive image! The cardiologist also spoke to what she would expect for Asa's future. She said that if all goes well in his open heart surgery, she does not expect anymore heart surgeries in his future. She expects him to live a very healthy and normal life and to be able to keep up with his big brother just fine. She said if he wants to go out for varsity sports in high school, they say go for it! It was so encouraging to hear from the doctor's mouth that once we get through this difficult newborn stage, we have every reason to believe that he will be a perfectly healthy and normal kid.
We also got to watch Asa on a big screen TV most of the morning during his sonogram and echocardiogram. He was moving like a madman and made it difficult at times for our patient sonogramists to get good images, but he sure made them giggle! We got to watch him in 3D for awhile, and he made was making sweet smiling faces as we peeked in on his life in my womb. It never ceases to amaze me that we can look through my belly and see him! The OBGYN reported that Asa is looking great and doing everything a normal baby should be doing. They were very pleased! He weighed 3.9 lb which put him in the sixty fifth percentile for growth. Way to go baby! Here is a sweet little picture from his sonogram:


We also learned yesterday that the time between Asa's birth and his heart surgery will most likely be seven to ten days, and we had originally thought it might be just three to five days. This is the time that he will be in the NICU. After his surgery he will be in the PICU (pediatric intensive care unit) for about five days or more. They said this will be the most challenging time. Asa may not be fully conscious for a lot of his recovery and he will have lots of tubes in his tiny body. He will not look well and he may lose some weight, making him look more sickly. Once he is stable and not needing so much support, he will be moved to a place that was only ever referred to as "the fourth floor" to finish his recovery. We got the sense that this will be a more enjoyable time. This is where he will be learning how to eat again and where we will be taught by the nurses how to care for a heart baby and how to be heart parents. They said we could expect to be on the fourth floor for up to two weeks as Asa learns how to eat again and proves that he can eat well enough begin gaining weight. Then, Lord willing, we will be discharged from the hospital and come back to our cozy home with our one month old baby, where he will be cuddled and held for the rest of his life. :)

Whew! It was a lot of information, but we feel a little more secure now that we understand more of what will be happening. We got tours of most of the places where we will be spending so much of our time, and it was really helpful for me to get those visuals in my head.

So in quick review, here are our updated prayer requests;
- Praise God for his great work in making one of Asa's heart openings bigger!!
Pray hard that God will continue that great work, and cause the blood in Asa's PDA to flow in the correct direction. Pray that if there is any problem with Asa's lungs, that God would heal them and make them normal.
- Pray that his coronary arteries are all normal. I didn't mention it because it is an extreamely small chance that they would be abnormal, but if they were, it would make the surgery very risky, difficult, and challenging.
- Continue to pray that i do not go into labor early and that Asa will stay in there until 39 weeks when I plan to be induced.
- Continue to pray for a smooth, uncomplicated, and peaceful delivery.
- Continue to pray that Asa will be stable enough after birth to be held and cuddled.
- Pray that he remains stable enough in the time between birth and surgery to be able to nurse.
- Pray for his surgeon and that God is preparing him with all the skill and steadiness of hand he will need for Asa's surgery.
- Pray for a smooth recovery from surgery
- Pray for that Asa catches on quickly and will have a smooth transition as he learns to eat again after his surgery
- Pray for Steven and I, that God will open our eyes to all He is accomplishing through this difficulty and that He will open our hearts to all He has to teach us through this difficulty.
- Pray that God continues to equip us with faith and strength to make it through this trying time.
- Pray that we can embrace this time as a slight and temporary distress that is producing for us a transcendent glory never to cease. Amen!

Thank you all! Your support has been overwhelming!
You can expect another Asa update in about four weeks, after our next Children's Mercy appointment.

Comments

  1. Hi there Emma,
    This is Anna (Grubbs) Unruh. I have been reading your updates for awhile now since my mom forwarded me your blog. You are a rockstar. God is making you strong. As you may or may not know, we almost lost my oldest daughter to bacterial meningitis when she was 2.5 years old. She was in the PICU at CMH for a few days and the 4th floor for 2 weeks. When you were describing where you will be when Asa is born I could picture all of it except the NICU. :) We always joked when Holly was in the hospital that the baby heart patients always got to leave before us! :) I will pray that your stay is short and you can head home to normalcy a soon as possible. I will also continue to pray for your heart. I cannot understand or imagine what you have/are going through. Hang on to the small and big ways that God is showing you His love as you go through this journey.
    God Bless you,
    Anna Unruh

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  2. EMMA!
    the "fourth floor" is 4 sutherland-- essentially across the hallway from my floor. I'm on the 4th floor, just a different unit! :)

    glad your visit was encouraging, hang in there, I'm praying for you all!

    love love love,

    carolyn

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  3. Emma,

    First of all I LOVE your blog and have been praying for you and ASA! You are so brave to bare your soul for all to see. God is doing a miraculous work through you!!!

    I just wanted to encourage you, mom to mom, about some of the fears you have expressed surrounding his birth (i.e. not getting to hold him right away, nursing, etc.) I understand exactly how you feel, when you realize what you envisioned that moment being like isn't going to happen. I didn't get to hold Chloe right away, and I didn't begin nursing her until she was about two weeks old. Of course this wasn't how I would have liked it to be, but God in His infinite wisdom had a different story and purpose for Chloe. He showed me His power as God the Ultimate Healer, and taught me to combat sadness with a grateful heart. He made Chloe a tough little fighter, and I know He is preparing Asa right now inside of you! Spending the first month of your baby's life in the hospital is not ideal, but down the road it will seem like it went by fast.

    I'm praying with you; not a day goes by that the Lord doesn't place sweet Asa on my heart.

    To God be the glory!

    Maddie

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  4. Hugs to you Emma! I'm praying for you and Asa. Love, Becca

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