Hi friends,
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)
Praying, Rose.
ReplyDeletePlease don't apologize for the change in tone. Some days are just so incredibly hard. You are doing this thing, being there and making sure Jude knows his mama, connecting with the people who care for him, leaning on faith. You are strong - but that doesn't mean you have to like it and be graceful and cheerful all the time. Nuh-uh!
I want to tell you that Samuel's reherniation went so so smoothly that we came home again 6 days post-op. Now, we had already been home for a couple of months before the reherniation so I realize it's different. But Sam rocked that 8 hour surgery like we couldn't possibly have expected. I know it's scary. I just wanted to share a little light in there too.
Corinne
Our little family has been praying for Jude since not long after he arrived. We saw a prayer request for him on Kelly Stamp's blog. We will continue to hold you all close to our heart and hope that all goes as well as possible over the next few days.
ReplyDeleteOur daughter is nearly 9. She was a 4lb 6ozs premmie. She was only in hospital for a month. BUT, she did practise one step forward and two steps back over the first 14 days of her life with some heart issues. She is one of only two kiddos in the world with her condition. So we understand what it is like to be frustrated with the unknown and the angst our precious bundle caused her very large medical team.
God Bless. We will continue the prayers. Go Jude! Keep up the good fight.
So we understand a small fraction of your journey.
We will pray.
You are allowed to have days of sadness, exhaustion, grief and frustration. Just let yourself feel those things and know that they are totally normal. That doesn't make it any easier, but there's no reason to add guilt to the list of complicated emotions! Know that we are praying for you lots and lots. And of course for Jude too. Sending love.
ReplyDeleteI'm a new mom and too often feel overwhelmed...I cannot imagine what you are going through! I pray for Jude all the time! Thank you that through all of this, you are still showing such incredible faith and trust in the Lord! He is the ultimate healer and we are praying that He will heal your sweet boy quickly!
ReplyDeleteDear sweet sister in Christ, I know God will see you through this valley as He has many others. I am encouraged that you aready realize this. I am in prayer for Jude, you and your family, the doctors, nurses, and all involved. We love you!
ReplyDelete"And He said unto me, "My grace is sufficent for thee, for My strength is made perfect in weakness." Most gladly therefore will I glory rather in my infirmities, that the power of Christ may rest upon me." -2 Cor. 12:9
It is such a blessing to read the posts and know Jude and you and Brian are covered in prayers. I have asked my small group to also pray and today I told them of the surgery next week. It really does lift us up to know we are not the only ones praying. Ah! If only we could see the tally! I bet it would astound us to know how many faithful prayer warriors there are out there. I am so thankful for the communication made possible by blogs and FB. I feel so close to you Rose and Brian even though I haven't seen you since your wedding. Know that Starr and I continue to pray for you all and we wouldn't have it any other way .....we love you!
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