Rose here.
Spent most of my day with my little man, Jude. Thankful for his snuggles and glad that he took a long nap in my arms.
Sadly, Jude had a rough morning. He had an episode and was struggling with his breathing. His episode was bad enough to get the attention of the doctors and Jude was placed back on Vapotherm. Apparently, there was quite a lot of consideration about reintubating him as well. This greatly worries us and we were very upset to hear that his little lungs are struggling again. It is generally thought that his struggles are related to Jude's reherniation but there could be more problems too.
Right now the plan is to keep a very close eye on Jude and how he is breathing. Today, the docs decided to allow Jude to rest and recover from his tough morning. The hope is that Jude will settle in to being on Vapotherm and that he can remain comfortable there. But Jude is also on the higher end of the settings that Vapotherm and if he cannot stabilize on it then they may consider reintubating Jude. We really don't want Jude to be back on the ventilator. It breaks our heart that this is even having to be considered. Please pray specifically for Jude's respiratory status. I honestly don't have the words to express how sad we are when we know that he is struggling.Jude is not himself anymore. He isn't smiling very much anymore and he is mostly fussy when awake. We are trusting the Lord for each day. Every day I pray that the Lord will give each of us exactly what we need for each day. Will you join me in praying for this?
We will be having a meeting on Monday with the surgeons, neonatologists, nurses and other specialist to discuss the plans for Jude's care. We are thankful to have everyone at the table together to talk about what will be best for Jude. Will you join us in praying in advance for this meeting? Please pray for wisdom for everyone involved.
Today is CDH awareness day and this evening I saw the picture below on a fellow CDH mom's facebook. I thought it was a great way to explain how CDH impacts the sweet babies that it plagues. I hate CDH. I wish that we could find out what causes it. I wish that we could find out how to treat it.
I am thankful that one day our Lord will return and make everything WHOLE. No more sin. No more death. No more illness. No more CDH! HE will make all things new and HE will be glorified!
Lastly, a friend of mine gave birth to her sweet daughter today. Her daughter also has CDH. Please join me in praying for her daughter and for their family as they care for her. Pray for strong lungs and a strong heart! Please pray that the Lord will give the family exactly what they need each day.
P.S. I apologize if this blog post seems jumbled and difficult to understand. My mind is weary today. (As usual!)
Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.
(Psalm 61:1-3 ESV)
