Thursday, July 12, 2012

Brother and sister

Hi friends,
Just wanted to drop in for a quick update!

First, let me show you a cute video of Jude enjoying his big sister. I thought my heart was going to burst open with joy when I saw this little interaction.

Oh, how I wished for these moments!!!


video

 Don't you just love his little growling giggle?

And here is a SUPER HAPPY BABY! 
We had to change out Jude's ng tube yesterday so we decided to try a little bit of food by mouth while he was tube free. He did SO MUCH better than he normally does with that awful tube running down his throat.
 Here is the little champ putting some apples in his mouth with his fingers. Num num num!

The goal for the next two weeks is to make some changes that will hopefully decrease the number of times that Jude is vomiting each day.

Here is the plan for Jude for the next two weeks:
1) We increased the rate of his feeds by just a little bit (see above). The hope is that his little tummy will handle the little bit of increased volume well.
2) The GI doc increased the amount of Prilosec that Jude gets each day.
3) Stop Jude's ng feeds for one hour so that he can have a break from being fed all day. If he handles it well the hope is that he will be able to have his feeds stopped for two hours each day.

I know that these steps may not seem like much, but they are HUGE baby steps for Jude's little digestive system. Will you pray for these changes and that Jude's tummy will be a fan of the new plan?

Additionally, Jude was fitted for his helmet on Wednesday morning and it should be ready for testing in a week or so. I've been told that he will wear it 23 out of 24 hours a day.

We had quite a crazy, hectic day yesterday at MUSC but the highlight of our day was sharing our little man with the NICU team. It was so much fun to see his face light up when he saw many of his primary nurses and doctors! And of course he was thrilled to see his therapy friends too. We are SO glad to be home with our little guy...but we are also missing the awesome friends we made during Jude's 6.5 month stay. We are thankful and certain that many of them will continue to be a part of our lives!!

So, what is on our radar for the next few days and weeks?
Jude started physical therapy this week and he will have his first occupational/feeding therapy tomorrow! We are super excited about him getting the opportunity to work with these two therapists...we've heard great things about both of them!
We also have several other follow up doctor appointments in the coming weeks. Plus we stay connected with our local pediatrician.

We also wanted to thank all of you for helping our transition home go a little easier. Thank you for the many meals that were provided for our family so that we could settle in without giving a thought to "what's for dinner?" Thank you for being so understanding of our desire to keep Jude safe and as protected as possible. We promise that we are planning a BIG party in the next year to allow all of Jude's prayer friends to meet him!

Well, that is the scoop for now...until next time!

8 comments:

  1. My heart just melted when Annabelle said she was with Jude AND mommy AND daddy! She is so happy and Jude obviously adores her already. Good luck with the helmet. I dreaded the thought of Ramsey wearing it for 23 hours, but it wasn't so bad and his head is much rounder now.

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  2. I have been following your blog for some months now. I heard about you when my granddaughter, Lila, requested prayer for him. We have an 18 month old great granddaughter who wore a helmet for several months. She did just fine and we got so used to it that we didn't pay any attention to it. Her head is nice and round, too. So glad all of you are together.

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  3. Oh, that video is PRECIOUS!!!! Such a happy baby and proud big sister. My heart melts. You're doing a great job, Rose. Hang in there!! Being home is great, but brings its own challenges for sure. Will be praying for all his therapies. :)

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  4. Oh what a blessings that those two sweet siblings are finally together. My heart overflows with gratefulness. I have prayed for you for so long that I love each of you. Jude is an answered prayer for me! God bless you! Such a beautiful and complete family!

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  5. His little face looks like it might explode from smiling so big! This just makes my heart happy. So many praises to our great and glorious God!

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  6. Rose, know that I am still following Jude and your family's journey with him. I am so grateful that he is home, but I know this brings new challenges. Love, thoughts, and prayers continue to come your way from Winston-Salem...
    Mary Ann

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  7. I am still praying for your family and praising God that you are able to enjoy those sweet sibling moments that are often so easy to take for granted.

    My now-2-year-old son wore a helmet for several months. There were some tips that I was given and followed that really helped. You will probably be cleaning the helmet with rubbing alcohol during that 1hour it is off his head each day. It comes in 2 different strengths (I'm thinking 80% and 90%). The stronger one is a little harder to find, but I think it works better. Put the alcohol in a spray bottle. It makes it easy to spritz it on the foam of the helmet then wipe it off. After cleaning, put the helmet out in the sun every day possible (even in the winter). We never had problems with smell.

    My son adjusted to his helmet really quickly and I got very used to the way he looked in it! I found his helmet the other day and couldn't help but smile. It was so tiny!

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