Thank you for being so patient and waiting for blog posts about Jude. Originally our plan was so write blog updates about Jude while we sat beside him in the NNICU but on our first day we learned that all cell phones, lap tops, tablets, etc. are banned from the NNICU because they are major carriers of germs and viruses. So, it can be tough at the end of the day to find energy to post a blog...but we are so thankful that the NNICU has chosen to protect all the sweet little babies from the many germs that can come from frequently used electrical devices. Thank you for continuing to check our blog for ways to pray for Jude and for all the texts, emails and phone calls of encouragement. We usually get all of them at the end of the day or first thing in the morning and they've been a great help in boosting our spirits and lifting our hearts.
I wanted to give all of you an update about the last two days for Jude:
- Jude's sedatives were scaled back a little bit to see how he would handle having less of them. He was alert and a little active for most of the day. It was so wonderful to look into his beautiful blue eyes and to see his little hands and feet moving. He has been so still for most of his life so this was a welcome change for us.
- He continued to receive respiratory therapy every four hours today and handled it well.
- And X-ray indicated that Jude's bowels remain decompressed (which we want because it allows more space for his lung to stretch out)
- Sadly, Jude became a little agitated and uncomfortable in the evening after a day of less sedatives and a pretty relaxed and more aware Jude. It was quite hard on us to see him so uncomfortable and upset. He has tubes in his throat so he is unable to cry but he was trying too. It was so difficult to watch him struggle so much. His rate of respiration was up (which we want to be low or not happening at all because it is the ECMOs job to do this at this point) and his blood pressure was up. I wanted so badly to scoop him up in my arms and calm him down.
- Aunt Becca and Uncle Jimmy met Jude for the first time too. It was so great to share our little guy with them!
- We returned for another visit (late night) and discovered that Jude was still quite uncomfortable and upset. We left in tears. It's tough weathering the ups and downs of CDH. It's hard to know our little guy is so sick and we just have to wait and see how he does in the coming days/weeks. We just want him to be healthy and comfortable. We found out that they may bump up his sedative medication again to help him calm down, relax and allow the ECMO to do it job.
- Brian woke up this morning with an irritated throat and stuffy nose. He is worried that he is catching a cold. So, he made the decision to stay home today because it would not be worth risking Jude catching his cold. It simply broke his heart to not see Jude today.
- Nana Beth went to the hospital with me today to spend time with Jude since Brian was not able to be there.
- Found out that they added a little of his sedation medication back last night because he continued to have trouble calming down. It seemed to help him quite a bit and we spent most of our visit looking into his sweet little eyes. He was semi-swaddled (which he seemed to love) and most of the time it seemed like he was listening contently as we talked to him.
- Jude was given more lasiks (spelling?) to continue to help him pee off some of the extra fluid he is retaining. He was peeing very successfully today! :)
- X-ray showed a little bit of air in his bowels. Right now the goal is to keep these decompressed and without air.
What you can pray for:
- Brian to get some rest and get well so that he can see Jude ASAP!
- For his bowels to decompress!
- Continued fluid removal from his body to keep him from getting puffy.
- A continued restful state for Jude. We'd love for him to stay off of as much medication as possible, but we also want him to be peaceful and restful so that the ECMO can do it's job. Pray specifically that he will not try to breathe so much on his own and that he will give his heart and lungs a rest until they are needed for the big push when he comes off ECMO.
What we are thankful for:
- Kind doctors, nurses and NNICU staff members who are taking great care of Jude and our family. They've taken time to explain everything to us and to help us through this journey.
- Nana Beth and the many ways that she has cared for our little family.
- A cozy, comfortable home for us to stay in during our time here. It is truly a HOME away from home.
I hope I'm not forgetting anything. My brain feels so tired at the end of each day. I'm hoping that we can post some pictures to this post tonight. We are limited on the amount of information we can use with our internet connection, so I am going try to get my dad to post some pictures of Jude and the ECMO equipment from his computer in Florence. If you are reading this blog and there are not any pictures up yet, check back later.
Please continue to keep up with us via facebook and our blog. We covet your prayers for Jude. The Lord can heal him!