Wednesday, December 18, 2013

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.

Sunday, December 15, 2013

Asking for your prayers...

Please keep us in your prayers tomorrow. We have an appointment at children's mercy hospital to continue to monitor Asa and make plans for his birth. Our appointment begins at 8:30 am and it will go into the afternoon. We will meet with every team of doctors that will be working with us and with Asa, and then we will have an echocardiogram and another sonogram. Please pray that as the doctors check up on Asa they find no more complications. Please pray that they find his condition to still be very fixable and, Lord willing, improved. Please pray that we will gain some comfort and not more anxiety from this appointment, as we will be learning more of what we can expect once Asa is born. Pray that God will bless us with the comfort of his closeness as we go through the day.
Thank you all in advance for the prayers and support you so willingly give to us! We are truly blessed to have  loved ones and readers so willing to pray on our behalf.
I hope to share any updates here either tomorrow or Tuesday, so stay tuned!

Sunday, December 1, 2013

Ezra's first birthday in heaven


Ezra Shepherd Sweat
December 2nd, 2012


My Sweet baby Ezra,

Happy birthday my love! I cannot believe you are one year old now. How I wish I could kiss your little face, but I asked Jesus to do it instead. I want to hold you in my arms and make you feel so special on your special day, but instead I hold you in my heart. If you were here with me, I would have thrown you the cutest little baby birthday party, just like I did for your big brother Levi when he turned one. I would have given you too many presents and I would have wrapped them in cute little baby birthday paper. I would have had the chance to watch you take your first bite of cake, wondering if you would smear it all over your face, or daintily flick the icing off of your hands like Levi.  I would be looking at pictures of you growing up through the past year, and stare in awe at the big boy you would have become.

But all I have is your newborn baby picture. And that is how I picture you in heaven. Still wrapped in your swaddle blanket with your little blue hat on, waiting to grow up until I get there. A year ago, my heart was stung by the reality that you were in heaven and not with me, but now a whole year later, my heart has grown warm to that truth. As your daddy and I have thought more and more about heaven, we have realized that it is the best and safest possible place for a little baby to be. Safe with Jesus. In his eternal arms that will never grow cold. His arms that are so full of love for you. More love than we can ever comprehend. Today, after a year's worth of healing, we can smile when we think of your life in heaven with Jesus.

You have taught us so many things, my precious son. You have taught us that this world has nothing for us in comparison to what God has for our lives. You have taught us to store up our treasure in heaven, holding the blessings we have on earth with an open hand. You have taught us true thankfulness. Our appreciation for life is so deep now. Our gratitude for what God has given us so easily overflows now, in ways it never would have before we had you, baby. Our Father chose you to teach us amazing things that will enrich the rest of our eternal lives. You have brought Him so much glory and honor with your tiny life on earth and we are so proud of you, little son. We are so thankful that God chose us to be your mommy and daddy. Thank you for all of these incredible gifts.

It is so sad that you're not here with us. We miss you. Our arms ache for you. Our hearts weep for you. This time of separation is so painful. But we know now more than ever that this is just a temporary separation. You were simply blessed to receive your eternal reward before we were. We know that in the span of eternity, we will be with you again very soon.

When we see you, we will kiss your sweet face over and over.

You will feel all of the love I have stored for you in my heart in one perfect and holy and heavenly hug.

When we look into each others eyes for the first time, you will see all of the years, and hours, and minutes, and seconds that I have spent anticipating this moment with impatient joy.

You will see all of the love and longing that my heart has been brimming with since the moment I felt your first little kick.

I will love you now and forever, and into eternity, my sweet baby. Until then, our Jesus is holding my hand, helping me make it through until our wonderful reunion.

Happy first birthday, sweet Ezra.

All my love,

Mommy


Therefore they are before the throne of God,
and serve him day and night in his temple;
and he who sits on the throne will shelter them with his presence.
They shall hunger no more, neither thirst anymore;
the sun shall not strike them, nor any scorching heat.
For the Lamb in the midst of the throne will be their shepherd,
and he will guide them to springs of living water,
and God will wipe away every tear from their eyes.

Revelation 7:15-17 (ESV)













We will hold your hand again soon precious baby