Joshua has had a slight fever from the medication they are giving him. It's not an infection, just yet another side effect. Because of the fever, they have not had to use his little heating bed to keep him warm. The bed was off almost all day yesterday. Finally, his core temp started dropping just a bit and the nurse turned the bed on- only it wouldn't turn on! They were able to warm him up another way, but he needed a new bed. Thank God for Shane, because he swooped in and said, "When you transfer him to his new bed, can Jill help hold him? She hasn't gotten a chance to hold him yet." The nurse said "Absolutely!" She told us that she would leave the bed switch for the next nurse since her shift was almost up, and that she would tell the nurse that I wanted to help.
We left the NICU for the shift change. (They don't allow parents in the NICU during the change to eliminate chaos!) Shane decided to take a break and go for some sushi with his mom, and I stayed and relaxed some. Finally, 8:00 came along and I went back to the NICU and the nurse said "Let's get that baby in your arms!"
So finally at 8:30 he was in my arms! I held him until 10:30. Since Shane wasn't there, I didn't get any pictures of him on my camera, but the nurses printed off a few that they took for me. If I can get them onto my computer, I will post them! I cried like a baby while Joshua just looked up at me with those beautiful dark eyes. I spent some time praying over him and telling him of God's promises. I loved on him, and once again committed him to the Healing Hands of Jesus. It was excactly what my mama heart needed. I'm so thankful to the nurse for being so sweet and allowing me that time with my precious miracle.
Now for the business part of the update: I talked with Joshua's neo this morning. Joshua is doing extremely well, and is holding his own as far as breathing goes. He's had a few apnea spells, but not anything that they have been concerned about. We talked about the next steps and he told me that the transfer to the PICU at Peyton Manning Children's Hospital will be today. They will take him the whole block and a half, by ambulance. He will be admitted there and will get settled in. Surgery will most likely be first thing tomorrow morning at 7am. He said that he will talk to the cariologist and then the cariologist will come and talk to us to finalize the details of the transfer and surgery.
I am going to be released around noon today, so I'm hoping the transfer won't be before that (I can't imagine that it will be.)
These past few days have been so encouraging to me and Shane. Joshua is strong, and is obviously a fighter. We are at peace and have such hope that he will do well through the surgery and recovery time.
Again, I cannot tell you how much I apprecaite all of you. There are no words to explain how much strength your prayers and words of encouragment have brought to Shane and myself. I have felt every prayer- we truly believe that is what has given Joshua the strength to do as well as he has. Thank you, Thank you, Thank you.
I will update more as we get closer to transfering to the PICU.
19 comments:
Your post is proof that God is watching over you and Joshua. He knew that you needed to hold your miracle and provided the perfect way to do so! What a fabulous moment that must have been for you. Just you and Joshua bonding and getting to know each other thru the healing power of his mama's touch. What a precious memory that will be for you as you watch him grow into a young man.
While tomorrow will bring uncertain circumstances into your life, please know that Joshua's story is already written. Hold on to the belief that Joshua will continue his battle and everything will go smoothly. I am praying for his surgeon and for Joshua to both feel the amazing peace of God's love in the OR tomorrow morning.
Shannon Egan
Go Shane! :-) It melts MY mommy heart that you got so much quality time with your little guy!!! Will be praying for you guys and the transition today.
BTW...what did Mitzy look like? I saw her name in one of Molly's pics and that name sounds really familiar...I think Jude might have had her. Unless there happens to be another Mitzy. ha!
I would love to help out in anyway you need tomorrow. Even if it is bringing lunch to you and your family. I'll be in touch later...I know you have a busy day ahead of you.
So happy that you were able to hold and give mommy love to Joshua! That is a true nourishment for him. Praying for all of you!
Sometimes, even when things are not perfect, things go perfectly. God is good. All the time. Joshua and your family remain in my prayers ... that everything continues to go well, that Joshua stays strong and stable, that God guides the surgeon's hands, and Joshua makes a seamless and speedy recovery, and you're all home together soon.
WOW, so excited that you got mommy time. how wonderful! can't wait to see you all. God is sure looking over you all and especially Joshua, will keep praying for great transfer, the staff (drs, surgeons, nurses, even custodial care of NICU/PICU), all who come in contact with Joshua!
So sweet to see Caleb with his little brother. And I'm so glad you got to hold Joshua so soon! I didn't get to hold Myra for 9 days and it was agonizing. God will continue to put little blessings on your heart to sustain you. He is so good!
Found your blog thru Funky Heart & wanted to see Joshua's progress that he is making. I, too, am a CHD mom & just wanted to encourage you as you are welcomed into the CHD world.
Our son, Kaston is 7 yrs old and has Tricuspid Atresia (like Steve on Funky Heart) and HRHS. He was, praise God, able to skip out on the 1st staged surgery, had his Glenn at 6 mos. & Fontan at 22 mos. He is a ball of energy and is just a pretty normal little guy - well actually, he's a super strong kid in my opinion!
Please know that our family will be praying for your family to remain steadfast in your faith, that He gives you the understanding and peace within your new world of CHD, and that Joshua's medical team know the exact course of treatment. Praying for his 1st surgery go exactly as planned with no complications or surprises, that he have a tremendous recovery and remain free from infection and human error and that He wrap his healing arms around Joshua and your family these first crucial weeks. Praying for an easy transition on big brother & sister (because they're life will change just as much as everyone else's), that mom & dad receive the best rest possible while staying in the hospital (don't forget to take care of yourselves!) and that your extended family be caring & supportive as you ALL transition into the world of CHD's and everything that comes with it!
May the peace of God be with you!
Many blessings,
Jamie Snyder
Amarillo, TX
carepage: kastonsnyder
I'm crying absolute, uncontrollable tears here (please don't let anyone walk into my office right now... they'll think I've lost it!). Your description of holding Joshua just grips my heart.
Tomorrow, every hour on the hour, I'm going to set my phone alarm. I will pray for Joshua and his doctors, and for you and your family. Every hour. On the hour. All day. <3
So happy that you got to hold your baby boy!! That's some good therapy, for both mama & baby :)
Continuing to pray that Joshua won't need to be intubated before his surgery!
My favorite update yet. Praising GOD!!!!
What a wonderful update! Praise the Lord! I'll continue to be in prayer for all of you! God is good!
We will continue our prayers for your family. I remember the joy of holding Ava for the first time - thank you for your beautiful post bringing back that wonderful memory. Cherish each moment, don't rush ahead into the future, and rely on God to provide each step of the way, celebrating the smallest of blessings He will shower upon you each day.
"Do not let the fear of 'what if' rob you of the joy of 'what is.'"
author unknown
melissa
Wanted to let you know that you, Joshua, and the entire family are in my thoughts. As a fellow (and recent) CHD mom, the roller coast ride you are now embarking on is a very vivid memory. My now 6-month old son was born with Transposition of the Great Arteries, which we also found out about before his arrival. Having that time to prepare was a tremendous blessing. He had his Arterial Switch Operation when he was 8 days old. Since then, he has been thriving and living up to his name which translates to "Conqueror" or "One who Prevails." I wish you all the best with Joshua for his surgery tomorrow and his continuing heart journey.
So great to hear he is doing well. We have been praying for you all and will continue. He will do great durning his surgery and one day this will all be a distant memory!
Jennifer
Mommy to Colin - HLHS 16 months!
I'm SO GLAD you got this special time with Joshua, and for how it filled your heart. It's so special that you got that, that Shane jumped on the chance to advocate for it, and that the hospital was all for it. I praise God that Joshua is such a fighter and that he's doing as well as he is. He really is going to give HLHS a 1-2 punch to the gut.
I am praying for you all every day. Thanks for the regular updates, Mama!!
I read you latest entry and cried. How wonderful the way God works. Who after seeing just in your family's life and world of what is going on, could not believe in our almighty God. We love you guys.
Praying that it is His will for little Joshua to have an uneventful surgery and most importantly, an uneventful first 24 hrs. The CHD community is praying for you, too. I know how exhausted you are right now. I pray you have relatives/support next to you. Drink lots of water, Mommy, you'll need it to recover and for your milk to come. Your milk will be the best thing for him after surgery. I can't help but weep, I'm living it all over again with you, I'm praying for you. HeartandArt(HLHS Mommy)
I just wanted to check back in on you.
I hope you can feel how much love and support the Heart Parents are sending your way. We have all been there - we know what you are going through, and yes, it brings back the memories of our own time sitting in the waiting room clinging to the hope and promise that our child would make it through.
Jill, if there is only one thing I could say to you it would be this: Take care of yourself. Joshua needs you to be strong for him. As you are walking with him to the OR tomorrow know that God WILL BE IN THE ROOM WITH HIM. Have faith. I know that is easier said then done. I remember being on my knees in the waiting room begging my Higher Power to let me be the one to go through the surgery. I would have gladly done it and without being under if it meant my baby did not have to suffer thru open heart surgery. Remember to reach out - other heart parents know exactly what you are going through.
I will be sending extra prayers and encouraging thoughts your way. Praying for the entire medical team that will be in the room with Joshua.
Remember to kiss his little chest and take heart in knowing that he will soon have his "zipper" that will show the world what a fighter he really is! You will come to love that badge of courage. I thank God every day for McKenzies...
Shannon Egan
Praying for God to give you and your family peace tomorrow during that long wait. Praying that God will send his angels into that OR and watch over Joshua and guide the surgeon's hands. My grandson was born almost 2 years ago with HLHS. He didn't have the Norwood at first, he had the Hybrid. It was the most difficult time, just waiting. Trust in God and He will get you through.
Heart Hugs!
Gale Bagwell, Grandma to Ivan Taylor, HLHS
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