Wednesday, May 30, 2012

So much happening but so little time to share!

Hi again!

I wish that Brian and I had more time to sit down and write a looooong blog post about everything that has happened with Jude over the last two days!!!! Our little man is working so hard!

But I must be honest, the pace of this stage of the journey is tough on our little family.

At this stage in Jude's journey, we feel like we should be with him as much as possible (even rooming cool is that?!?!) to be his advocate and to be a part of his day to day development. But this also means that when one of us is with Jude the other is with Annabelle and therefore Brian and I are rarely together. We are already tired but pushing through because we know that this is a very exciting stage in Jude's life! Will you pray for renewing rest for Brian and I? Will you pray that Annabelle feels balanced and loved even though she is not seeing both of her parents at the same time? We know that this is just a season in our lives and that the Lord will provide for our needs for every day...just as He always has!

So, I know you want to know what my cutie has been up to. Here are the highlights:

-He was moved to his own private room in the Children's Hospital on Tuesday! He seems to really enjoy his big boy room and we are quite thrilled about the fact that we can be with him overnight. On Tuesday afternoon, the nurse closed the door and I realized for the first time that I was alone with Jude for the first time since he has been born. I was in tears. What a beautiful moment it was to snuggle my sweet little guy.

- Jude is on nasal cannula still, but remains on very low settings. I think that the doctors think he is capable of coming off the oxygen support but they want to be extra cautious and totally sure that he is ready. He are thrilled with his respiratory progress! Praise God for those growing, hearty lungs!

- Jude is now off of the medications that he was on in the NICU and PICU. He only has two remaining meds to wean: methadone and clonidine. He will likely be off methadone by Friday and the clonidine will follow shortly thereafter. It is hard to imagine Jude free of any sedatives or pain meds. Please pray that Jude will avoid experiencing withdrawals. He has been working so hard to get off these medications...what a tough little man!

- Will you join us in praying for Jude's feeding? He is still being fed through a tube in his nose directly into his stomach but he continues to throw up a few times a day. He was throwing up a few times a day when he was being fed into the top of his intestine a few days ago but it's just no fun watching him throw up over and over again. My heart breaks for him each time he vomits. It is understood that Jude has severe acid reflux but we are wondering how much vomiting is actually ok. We've been working closely with OT, speech and Jude's doctors to get some answers. Yesterday he had an upper GI study and it was discovered that everything is moving through Jude's digestive tract fine despite his matted intestines. Praise God!!! (I did a little dance in the x-ray room when we got this news!) Jude tried some baby food apples and rice cereal by mouth today and he seemed to enjoy the food (and even swallowed some!) but then threw up. Poor sweet boy! Overall, just continue to pray for Jude's eating abilities whatever they might be. At this point, we know that feeding is mostly what is keeping Jude in the hospital. We want answers, but we want well informed and thought out answers. As much as we are anxious to get home with Jude, we are more anxious to be sure that Jude is going to be able to get nourishment in the best possible way. Please join us in petitioning the Father for clear answers on what is healthiest for our Jude.

Well, that's all for now! We hope you will join us in celebrating this amazing milestone in Jude's journey! To God be the glory for the miraculous things He has done!

*Hoping to post some new pictures of Jude in his new place in the next few days!


  1. What a long, tough journey your family has been on. Praise God for this HUGE milestone! I can only imagine how much you have wanted to be able to be with him at night and I'm so happy you are getting the greater access now in his own room! My prayers will continue to be with you and Jude!

  2. Love the progress report!! Go Jude Go!! Lots of prayers for you all, daily. There is so much light at the end of the tunnel!!

  3. Such exciting news! Will be praying for Jude's feeding progress :)

  4. Such an encouraging update! Praying for you all.

  5. Praising our Lord in heaven for answered prayers and healing!

  6. Such wonderful news!!!! I'm praising God for his progress.