Tuesday, January 17, 2012

Just me and my little man

Today was my first day at MUSC without Brian. It was tough to be without my sweet hubby and I know that he is really missing Jude too.  Brian will hopefully be able to work an adjusted schedule to allow for time to help with Jude's care too. We are all missing Brian and it is tough to have Jude experiencing so many changes without his daddy by his side. Annabelle is missing Brian quite a bit too. Will you keep us all in your prayers as we transition to a new stage in our journey?

Jude had a pretty good day today. He continues to breathe well with his CPAP and seems to be getting the hang of tolerating the annoying cannulas that stick in his nose. (Most babies hate how these feel in their little nostrils.) It was so great to hear Jude cry and coo throughout the day.

The doctors and nurses are beginning to start weaning Jude's pain and sedative medication now. As we may have mentioned before, weaning is going to be a very long and difficult process. Jude is a big boy and he was on quite a bit of medication for quite a long time. The hope is that Jude will experience little to no withdrawal symptoms but he may face a few struggles to be free of his medication. Will you pray that his weaning process will be much easier than anticipated?

The doctors decided to increase Jude's continuous feeds (through a line in his nose) of breast milk to 3ml an hour. It is such a small amount, but they are continuing to increase his feeds and that is good news. It is very important that Jude learns how to eat and digest breast milk so that he can grow and continue to a healthy weight. Please join us in praying that Jude will continue to have good experiences with food in his tummy. Pray for no spit ups or problems within his digestive system. Pray that everything will continue to work much better than expected. The Lord has given us so many miracles with our little Jude!

Jude had his first visits from the physical (PT) and occupational therapists (OT) today. I missed the chance to see the PT but it is my understanding that they worked with Jude on his range of motion in his limbs and neck. Jude's neck is quite stiff because he had to remain in the same position the entire time that he was on ECMO. The OT worked with Jude's oral stimulation to help him make steps towards taking a bottle or breast feeding. Jude did well with his first OT session and the OT showed me some of the ways that I can work with Jude too. I am very encouraged that Jude is now getting services from PT and OT.

Jude was supposed to get an ecocardiogram today but for some reason things did not go as planned. We are anxious for this to be done so that we can get a better understanding of any pulmonary hypertension. Please pray that the ecocardiogram will be completed tomorrow and that there will be little or no pulmonary hypertension. At this point, it seems that Jude is not suffering from pulmonary hypertension because he is not displaying any of the clinical signs that it is plaguing him. But it would make us feel much better for an ecocardiogram to give us some clear answers.

I went to visit Jude again this evening (can't stay away from the boy!) and I was able to hold him again (second time today)! I can't get enough of holding Jude. Tonight we locked eyes for quite some time and he made sweet little baby noises while I held him. Eventually he fell asleep in my arms and made my night. I am so thankful that the Lord has brought us to this point in our journey.

Rejoice in the Lord always; again I will say, rejoice. -Philippians 4:4


  1. Rose, Brian, Annabelle, and Jude-
    We are continually praying for all 4 of you!! I am so happy to hear how things have been going!! I'm an OT in the NICU at McLeod in Florence, and I'm SO glad that he is now getting PT and OT, that's a huge step in the right direction!! God is so Good!!

  2. All good....Thank You Lord! I am right there with you when I read your posts. Filled with gratitude for the miracle that happened and continues to happen for Jude. Rose, I learned a lot about pain meds from caring for my mom in her last days and throughout our 10 years of caring for her. She was addicted to drugs. In the end, I found out from Hospice that morphine is the purest and easiest drug to not only control pain ....but to wean from. It is a process and I have actually gone through the withdrawal process with my mom. You will be learning a lot also. I am praying for you and the caregivers and Jude. I see such a bright future for him. Thank You God.....for your moment by moment care of Jude! You created a beautiful baby boy and I know you will continue to breath health and life into him. In Jesus Holy Name. Amen

  3. So, so, so happy for you!!!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  4. So happy to hear good reports on Jude's progress! Still praying for all of you!

  5. My daughter Raygen was on moraphine for a very long time after her first open heart surgery. The doctors had a very hard time weaning her so they switched her over to methadone and did a very slow wean. It made a huge difference. Methadone is longer lasting and doesn't have the huge ups and downs as moraphine. Just a thought. We got our happy baby back when we found methadone.
    Good Luck!