Sunday, December 11, 2011

An Update from Jude’s Mommy 12/10/11

Good Morning sweet friends,
Thank you for being so faithful to pray for Jude over the last several days. It has been a difficult journey for our little guy. It hurt so much to see him struggle so greatly during his first days. It was also so hard to know that Jude’s defect was so severe that he needed ECMO. But, we are thankful that he is resting on ECMO now and that his little body has been given a chance to recover and regroup after working so hard during his first 24 hours of life. Thank you for praying for fervently for him and for sharing his story with others. It is truly encouraging to know that so many people are going to the Lord for Jude. I know that the Lord is with Jude and our family every step of the way.
Yesterday (12/10/11), was an uneventful ECMO day. But we want uneventful ECMO days because that means that ECMO is doing it’s job correctly and efficiently to serve Jude. One “side effect” to being on ECMO is that Jude has become a little puffy from the extra fluid he is retaining, so a CVVH (continuous venovenous hemofiltration) unit was added to the ECMO machine to help take off some of the extra fluid in his body. This is not a cause for alarm and is actually quite common for patients on ECMO. Jude’s blood gases, ultrasound and echocardiogram all looked good yesterday too. Please continue to pray specifically that these tests will continue to have good results and outcomes that are in favor of Jude’s health.
One of my favorite things about our visit with Jude yesterday was that Jude was given a few swabs of my breast milk in his mouth to give him access to antibodies! I was so excited and thankful that he could benefit from the milk I’ve been pumping. I know that my milk is made just for him and can help him grow stronger, so I was anxious to see him get a taste! He seemed to like it and smacked his lips afterwards. From what I understand, they will continue to do this from this point on. He will not receive “full” feedings until after his corrective surgery. Currently he is receiving nutrition through an IV but it meant so much to know that I was able to give him something to help improve his health.
Jude was a tad bit more active yesterday too. Brian and I enjoyed seeing him peek at us through little slits in his eyes and he moved his arms and legs a little bit more too. The nurse showed me how to do exercises with him too to help keep his range of motion healthy. It is so nice to be able to touch him and interact with Jude. I so desperately wish I could hold him in my arms.
Jude also got his first visit from the respiratory therapist yesterday. This was Jude’s first experience with “conditioning” his lungs for use in the future. The therapist turning the ventilator on very low settings to allow Jude’s lungs to move just a little bit and he also placed a vibrating tool on Jude’s chest to cause vibrations in Jude’s chest. The therapist said that Jude handled his first experience very well and we learned that he will continue “conditioning” every four hours.
What we are thankful for:
- The many ways that the Lord is loving on us through all of you! There are countless ways that we have felt the Lord’s goodness through His people. We’ve been visited by total strangers who are praying for us… has been given to allow us to have a meal without any work...cookies dropped off…notes, emails, and texts of encouragement….care packages…and even a fully decorated Christmas tree in our house when we returned from the hospital last night. Each gesture has reminded us that Jude and our family are remembered and loved by others and by Jesus. Thank you a million times over.
- A day of interaction with Jude. Most of his days he was very still and sedated, so we were thankful for a chance to interact with him.
- Annabelle is coming to stay with us for a few days!! My mom will stay with us and care for Annabelle while we are with Jude at the hospital. And we are SO thankful to see our little girl!
What you can pray for:
- Continued positive results from Jude’s blood gases, ultrasounds and echocardiograms. Specifically pray for no blood clots in his brain.
- Jude’s lungs and heart to rest and build strength so that they can sustain his life after he is removed from ECMO. We have no idea how long he will be on ECMO or how soon they will begin weaning him off, but please begin praying that his lungs and heart will be prepared and strong for this transition.
- Protection from viruses and infections for Jude and for anyone interacting with Jude. We want to keep our little guy well and free from illness during this part of his journey.
- Endurance for Brian and I (and our family) as we care for our sweet little guy. We know that this will be a marathon and not a sprint. Jude’s stay at MUSC could be a long one and we want to remain as healthy and well rested as possible.
For I am the Lord your God, who takes hold of your right hand and says to you, do not fear; I will help you. – Isaiah 41.13


  1. I will continue to keep your family in my prayers. When my son Jack was hospitalized for open heart surgery to correct his heart defect, I pumped every 3 hours around the clock for 8 days to make sure my milk supply was the same after his surgery/recovery. I wouldn't have done it any differently and am so glad that I was able to continue breastfeeding after he was off the ventilator and able to eat again, but I know that physically pumping for an infant adds another element to the experience of a hospitalized baby. I was lucky that Jack didn't need immediate surgery so I was pumping to maintain our nursing, whereas I know you are pumping to be able to have this experience. I will pray that you will soon have a healthy baby that takes quickly to nursing! - Courtney Landry

  2. Many, many prayers for another good, stabile day today!
    Mom to Dakota 12-25-2008
    RCDH/ECMO/premie survivor

  3. Hi from another stranger, but soon to be friend. I am an Occupational Therapist in the NICU at MUSC and started following your blog last week after seeing a post to pray for Jude on Lila Dodson's facebook page. I had to comment on this post b/c I look forward to Jude being stable enough to start oral stimulation, which we will start soon after he is off ECMO and medically stable. The note on giving him tastes of breast milk made me so happy as this is what we will expand on in order to help him learn to eat by mouth. I look forward to meeting you in person and will stop by and introduce myself if I see you at bedside. You will also get to know my co-worker Courtney who is awesome at her job. We look forward to working with Jude soon and helping with his motor and feeding development. Until then, I will continue to pray for his body and the care he is receiving, as well as for your family's strength. Take care. Katy Eisert