Wednesday, January 18, 2012

Big baby bed!

First off...some fun news!

Jude was moved from his first bed at MUSC to a crib (big baby) bed this afternoon! When I came in this morning Jude's nurse, (Leslie, one of our favorites) told me that she'd like to move Jude to a bigger bed so that he could have a little more room to wiggle. Many of you have noticed that Jude nearly looks like a toddler in his little bed because he is SO today he was given a little more space to stretch out. So this afternoon I held Jude for awhile (I'm always happy to snuggle with him!) so that Leslie could make up his new bed. This bed will also allow for Jude's head to be elevated a little more than the other bed which will be helpful in keeping his lungs clear and giving him a few new views to check out. He is especially enjoying looking at the medication monitors near his bed.
Here is a picture of Jude snoozing away in his big baby bed:
Doesn't he look totally cozy?

Also, in other good news today: Jude had his echocardiogram this morning and I spoke with a doctor this afternoon who stated that Jude has little to no pulmonary hypertension (PH) right now. PRAISE TO THE LORD FOR THIS MIRACLE! We are rejoicing and thanking the Lord for this good report! Please continue to pray that it will stay away! (Just curious, CDH parents out there: Did you child show signs of PH after his or her repair surgery? If so, how long after surgery did it show up?)

Jude continues to handle his continuous small feeds well. Today they upped his feeds to 4ml every hour. Additionally the OT came by today to work with Jude on his suck reflexes to help prepare him for bottle/breast feeds in the future. Will you join us in praying that Jude will be ready and successful in all his feeding endeavors?

Today, Jude also continued his journey towards weaning off medications. The doctors did not make any weans today and allowed him to coast a little bit today. I'm nervous about how long it might take to have Jude off of all this medication...but I know that the Lord will provide exactly what Jude needs and what our family needs to travel the marathon that we are facing. Please pray that Jude will wean from his meds easily.

I believe that is all that I have to share tonight...I'm quite tired. It is a little tough settling into a new normal this week without Brian here. I'm not sure if I will be able to update the blog every single day from this point on, but I will try my best. It's been such an encouragement to share our journey with all of you and to know that all of you are praying.

    Have you not known? Have you not heard?
    The LORD is the everlasting God,
        the Creator of the ends of the earth.
    He does not faint or grow weary;
        his understanding is unsearchable.
(Isaiah 40:28 ESV)


  1. Rose, Thank you for this update. I know it must be hard to write when you are tired. But I also know that when you write, it affirms what God is doing. It was relaxing to my heart to see little Jude looking so relaxed in his bed. How about just a photo every day. Father God, I know the work you are doing right now in Jude is inside his little body and it will not show up on a photo but just seeing he is doing well is such a comfort. His progress is amazing and we give you all the glory. We also lift up his caregivers and doctors to you and ask for an extra measure of energy and compassion be given to them. Thank You for your faithfulness Lord. We thank You ahead of time for preparing Jude for the weaning off the medications. We know You will work it out to his benefit because You promise to work for his and our good ALL the time. In Jesus Holy Name. Amen

  2. Praise GOD!! So happy to see how well Jude is doing. Post surgery, Finley's PH has been gone- not sure if it came back those first few days after surgery, but she hasn't had any issues with it. She had a follow up with her cardiologist at 6 months or so (she is 17 months old now) and they said they didn't need to continue to see her. Good luck on the feeds! Will be praying. It took quite a bit of work, but we did get Finley to 100% breast by 1 month after discharge - so anything's possible with these kiddos! Following Jude's story has been so powerful and has really been a testimony to God's glory and power. Thank you for sharing.

    Liz, mama to Finley L-CDH Survivor 8/12/10 and Rowan 8/17/07.

  3. I love Jude's new bed!! Dakota had the same acquarium and was enchanted by it. Isn't it amazing how something so little as a hospital bed looking a little more like a crib can mean so much?! I was so excited when Dakota finally moved to a hospital crib - third only to holding her for the first time and seeing her for the first time in clothes. It makes you feel like you finally have a real baby.
    Dakota's pulmonary hypertension left after her surgery and never returned. On her discharge report it said "pulmonary hypertension: resolved." She had an echocardiogram when she was 2 years old and still, no PH! Yay! Now, I have heard of many CDH kiddos who do have it after surgery and go home with it unresolved and remain on medicine for it until maybe 2 or 3 years old, maybe even more. I think it is a wonderful sign that Jude's is gone so soon after surgery and I pray that it will never come back! Many prayers for continued progress and for smooth eating (that is the hard part believe it or not).
    Mom to Dakota 12-25-2008
    RCDH survivor