Today was a crazy, crazy day. There were a lot of ups and downs...a lot of changes made with Jude's care today. I'm quite tired. Jude is tired too. Really we all are. Please lift us up in prayer...we knew we were in for a marathon, but this is a really long one.
We just want our Jude at home. We want him free from pain, IVs and monitors. We want to be all together in our little house. I want to see Brian every day. I want my children to enjoy each other.
I apologize for my change in tone today...please know that we are "keeping our heads up" and trusting in the Lords plan for Jude and our family. We are just going through somewhat of a grieving process for what we thought was just on the horizon = our son discharged from the hospital and at home in our arms.
Today when I was snuggling Jude I was imagining the four of us snuggled up in bed on a lazy Saturday morning...full of giggles and snuggles. At first I was deeply sad that we were not enjoying sweet moments like I'd envisioned in my daydream...but then I felt like the Lord was reminding me that we WILL enjoy the sweet moments all together...just not YET. I was reminded that my son is alive and with us and that the Lord has richly blessed our family during this time in our lives.
I won't go into all the details and ups and downs of today, but I will give you a general update on Jude's re-herniation status and how you can pray for him specifically.
- Jude has mostly handled his re-herniation well from a respiratory standpoint. Many CDHers who re-herniate often experience respiratory distress because their lungs are being crowded by the organs that have re-entered into their chest cavity. Jude has had very minimal changes in his ability to breathe thus far. Please continue to pray that this will remain this way. We really don't want our little guy struggling to breathe. We want him to remain as stable as possible until Jude's surgeon, Dr. Hebra, can get here.
- Because of Jude's re-herniation, his bowels are unable to tolerate any feeds right now. So, Jude is being fed again by TPN nutrition through a PICC line that is in his head. Please pray that his little digestive system will be able to wake up easily again in the future when feeds can be reintroduced. Please pray that his PICC line will remain infection free and free of problems!
- Please begin praying for Dr. Hebra now! We want to cover Dr. Hebra in prayer before he performs surgery on Jude next week. We don't have a date or time for surgery yet...but we know that Jude's surgery will be a serious one.
- Please pray for Jude's nurses this week as they care for him and try to keep him stable and comfortable until Dr. Hebra returns. So many of Jude's nurses know him so well and love him...we are so thankful for their tireless support for Jude and us! Please pray that the schedule/assignments for Jude's nurses will allow for his primary nurses to care for him throughout this week and weekend. We feel confident that Jude's primary nurses know him so well that they will recognize any problems or red flags when we are not able to be with Jude.
- Please pray that Jude's bowel and other organs will remain where they are. Since yesterday and X-ray revealed that more of Jude's intestines had moved into his chest. We want as much of Jude's insides to remain below the patched area. Please pray that his organs will stay put!!!
- Please pray for the doctors who are caring for Jude this week. Please pray that they will be clear and certain about the choices they are making about Jude's care. Pray that they will all be well rested and free from outside worries that may make their days more stressful.
- Please pray that Jude feels safe, loved and free from pain. It kills us to know that he will have to fight hard again. Pray for plenty of snuggle time with mommy and daddy.
- Please pray for us as we make decisions about Jude's care this week and next week. We want to be clear headed, well rested and wise.
We want to thank you for your thoughtful texts, emails, notes, phone calls and visits. We are truly honored that you have continued to remember Jude and our family all this time. This has been such a long journey...and it will be longer...but we know you all have us covered in prayer. And we are truly thankful. Bless you all.
For God alone, O my soul, wait in silence,
for my hope is from him.
He only is my rock and my salvation,
my fortress; I shall not be shaken.
On God rests my salvation and my glory;
my mighty rock, my refuge is God.
Trust in him at all times, O people;
pour out your heart before him;
God is a refuge for us.
(Psalm 62:5-8 ESV)