Wednesday, May 23, 2012

Hello from the PICU!

Hi friends!

 Guess who moved to the PICU today?

This ^ ^ ^ happy baby!

The plan was to move Jude to the PICU on Tuesday but I (Rose) got sick on Monday night and it was logistically difficult for Brian to balance a very sick wife, Annabelle and Jude's move. So, our wonderful NICU friends postponed Jude's move to today so that I could have a little extra time to recover.

Jude made his big move at 11am this morning and all went smoothly. He is already well known over at the PICU thanks to all of his wonderful primary nurses (and some very special non-primary nurses) from the NICU.

What would we do without them? Just thinking about these ladies makes me tear up. I don't think that I have the words to truly express just how dear each and every one of these nurses have been to Brian and me. This has been our hardest journey yet and Jude's faithful nurses have loved him and cared for him tirelessly for months. They helped us face our darkest days and celebrated Jude's victories with us. We are so thankful for each and every one of you. Each of you have individual and beautiful gifts that you share with your patients and their families. Thank you for what you do. We will thank God daily for you and Jude will grow up knowing just how lucky he was to have such wonderful NICU girlfriends! (I am talking about you- Lesley W., Meghan B., Kayte R., Anne H., Caroline C., Erika G., Erin B., Sara C., Martha D., Beth, Sarah H.!)

Jude's new doctors did not make any changes to any of his medications, Vapotherm or feeds....that will all be discussed and changed tomorrow.

I'm sure that you may be wondering what Jude is facing before going home.
Here is the scoop:
- Respiratory: It is likely that Jude will be moved from Vapotherm to nasal cannula sometime in the near future. We are very happy with the progress that Jude has made from a respiratory standpoint and we remain hopeful for his lungs to continue to grow and expand. Jude can go home on oxygen support from a nasal cannula but he must also conquer...
- Weaning his medications: Jude is still on pain medications and sedatives from his 2nd repair surgery. The PICU is really going to focus on weaning his medications and hopefully he will be free of these soon. He will continue to receive other medications that he may need for awhile (even after going home). But Jude also must figure out how to...
- Eat: This is a BIG one. There are so many possibilities to consider for Jude's digestive future. Will he get a G-tube? Is a G-tube a safe thing for Jude? Will Jude be able to tolerate feeds into his stomach? (He is still being fed into the top of his intestine) Will he be able to tolerate his feeds being compressed to shorter periods of time? Are we capable of learning how to feed him through a tube in his nose if they can't do a G-tube?

Whew.

Please just pray for all the tummy and feeding challenges ahead!

But here is a fun picture of our little guy taking some breast milk from a spoon!


How cool is that!?!?

That is all for now! We hope to share more with you soon!

Thank you for your prayers! Our little guy is getting bigger and stronger every day!

4 comments:

  1. Rose, just wanted to let you know I've been following your blog since your pregnancy and praying for your family ever since! I believe I met you the day Jude was diagnosed with CDH at Dr. Greig's office... I am a nurse there, and also a member of DPC. :) The sweet things you had to say about your RNs in this post brought tears to my eyes and I just had to comment! So many blessings! :) -Janelle Alier

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  2. love this. love seeing his sweet little face looking so happy. such good news. rejoicing with you!!

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  3. Sweet sweet chunky monkey! I am so glad you are feeling better and so glad that Jude is happy in his new home! Prayers every day!

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  4. Happy to see he's enjoying his new (temporary!) home in the PICU! So glad to hear that you've had amazing primary nurses in the NICU - you will no doubt quickly build a great team in the PICU as well. As a NICU nurse myself - it's always so good to hear shout outs to fellow nurses!

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