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 long...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:
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)