He was awake for such a long time today that I eventually got the camera out. I took some video (still learning how it works). He is sweet and cute as always, and you can see his swollen belly. In the background, you can hear Brandon talking to Caleb and our niece Maggie. You can also hear the shrill screaming of Jude's bed warmer right about in the middle of the video. Sorry about that. I think I'd recommend watching the video with the volume off. :-)
It was another hard day. The incision leaked again, and so the neurosurgeon made another visit. This time, he put in a few more stitches with an added dressing that is putting more pressure on the incision. We were told that sometimes these cases can be resolved in this way...that eventually they just stop leaking. We were also told, however, that 99% of surgical incisions don't leak like this. Jude falls in that 1%. We were sad to hear that, and we don't know what it means if his incision doesn't heal. It started leaking again after the neurosurgeon left when the nurses were applying the new dressing. So, hopefully the added pressure and the bandage is enough to end the leaking...because the stitches didn't seem to be enough. Please pray still for an end to the leaking...for healing for his incision so he can have his heart surgery.
We also had another conversation with another doctor about Jude's future. With each new hospital, we have to get to know the doctors and nurses all over again. They need to know what we understand about our little boy's condition. I sometimes think they don't believe we understand how sick he is because of the way we are responding. They also want to make sure they are on the same page we are as far as how much care they are giving him. With different levels of directness, these doctors have wanted us to know that they will give him as much or as little care as we desire. Obviously, we want them to do everything they can.
So, as you can imagine, this has been another hard day. Pretty heartbreaking. We've cried a lot, and we're tired. We know that God still has plans for this little guy. We know that God is still good. We know that we can still trust Him, and we are clinging to His promises.
Today, my tiny baby received stitches in his head. I watched for the few minutes I could tolerate. I watched him go through something painful, and it hurt me to see it. I ache even now as I think about it. But, I knew that he needed it. I knew the bigger picture. I knew that although he couldn't understand the "why" behind it all, we did.
We don't completely understand the "why" behind what we are going through with Jude. Right now, we are hurting. We are in pain. It's easy to get overwhelmed by the daily ups and downs. But, the Spirit of God reminds us to step back and see that the daily ups and downs aren't everything...they aren't the big picture. These days are just a few paragraphs in this story that Jesus is authoring.
What we do see clearly is that we have a Father who loves us...who wants what is best for us. We have a Father who is wise and all-knowing. He knows what is best for us. We have a Father who is all-powerful and can do anything. He will bring about what is best for us. Our Father is trustworthy and good. Yes, this hurts. But, we can't understand everything. He can.
Thank You, Father. Thank You for your goodness displayed in our lives. Thank You that you sent your Son into the world to die in our place. Thank You that You understand...and that You care more than we can comprehend.
"This is how God showed His love among us:
He sent His one and only Son into the world
that we might live through Him.
This is love: not that we loved God
but that He loved us and sent his Son
as an atoning sacrifice for our sins."
1 John 4:9-10
11 comments:
How sweet lil Jude is and how beautiful is your love for him! Continual prayers for healing & progress for him as well as more precious moments together. Prayers for deep rest for you two physically and emotionally along with continued wisdom and reassurance as you advocate for Jude! Beth (Ratliff) Novak
The video was so sweet! Thanks for sharing.... we're still praying for you guys. Hang in there.
Mandy, I am sooo proud of you who, as Jude's mommy, grasps so profoundly the true meaning of his life, which is to point people to the cross. Proud isn't really the right word... I'm convicted, encouraged, and longing for more of Jesus myself. Thank you for entrusting Jude to his Father, to whom he really belongs. Thank you for preaching the gospel in the middle of the greatest season of suffering a mom can go through. I love you so much, friend!
Ditto what Holly said! So grateful God is showing you His love and grace through the most difficult season of your life. We will pray He continues to do so and you will be soft in heart, as you are now to hear what His truth is. We also continually pray for Jude and his healing. Ali and Taylor don't let us skip a meal or bedtime without praying for "Baby Jude Matthew" as Ali says. Taylor lifts Caleb up in prayer as well regularly. Missing you. We love you all so much!
Mandy, he is so precious. I can't imagine what you are going through but know I think of you and your family every day and I look forward to your positive attitude and your pictures to show me what life is about. Who would have ever thought the little girl with the long curly hair would turn out to be such a strong beautiful Mother. "Double Do"
Thank you for all that you are sharing with us, that we might know specific need to pray for. We haven't been keeping up as much with the fire here in town (Bastrop, TX) these last few days, but you have remained in our prayers daily.
Amiga anoche no podia dormir y pensaba en ti, en mi querida amiga Mandy cuidando de su hermoso bebe con todo el carino del mundo sin perderse de un instante de el tiempo junto a el. Pensaba en lo admirable que es tu FE y lo afortunada que soy de tenerte en mi vida dando un ejemplo de super mama y de valentia ante las pruebas de la vida! Estoy admirada de ver la forma con la que enfrentas tiempos dificles eres un gran ejemplo amiga, eres una luchadora, una vencedora te quiero con todo el corazon amiguita linda!
En casa estan siempre presentes, Luca en sus oraciones pide por Caleb y Jude antes de ir a dormir al igual que Juan y yo. Ahora que regresabamos de la escuela me decia que extraniaba a Caleb y que ya los dos dos tenian 5 anios, esta muy emocionado por eso!!
Gracias por compartir el video de Jude esperamos mejore dia a dia estaremos orando!!
Praying for rest that restores your bodies and souls. Praying for God's hand to touch Jude sweet head and heal it completely. Praying for HOPE in the midst of pain. We love you.
He's so beautiful I just wish I could kiss him. What a kissable little face. Thank you for sharing your journey.
Oh such a sweet little boy!! I loved that video! I'm working on a post with lots of pics of Caleb. He's sitting next to me begging to play in the mud! He told me to write "I love you". He asked if you would send a thank you back to us.
Praying for you this afternoon as you sift through all of these realities that are settling in.
Caleb just added, "I love my mommy. I'm glad my birthdays coming up."
Still praying for you all! Please pray for my youngest brother Tim as he heads out to Afganistan. He will be there until mid Ocober. He is retired Marine Corp . Happy belated birthday. I celebrated my birthday on Sept. 7th. God is working out ALL the details--just trust and lean on him.
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