Friday, June 22, 2012

Hello again!

Hi friends,

It's Rose again...except this time I am a little more rested. I think I should have waited to write a blog post until I was better rested. This morning I woke up and re-read my blog update from last night and laughed at my atrocious spelling! I was literally falling asleep mid-sentence every other minute.I thought about taking the blog post down and starting again...but I think I will leave it up for a reminder of just how tired I was during this stage of the journey! Ha!

So, let's try this again!

(I love that some of you sent questions for me to answer! Keep them coming!)

When Jude comes home what will his needs be?

We know for sure that Jude will come home being fed formula through his ng tube. Jude will not be getting a g-tube. So, he will come home with a pump that will be used to feed him. His pump will be connected to him throughout most of the day. He is on continuous feeds right now and will remain that way until we get the go ahead from his doctor. We will work closely with our local pediatrician to make sure that Jude is getting all the nutrition that he needs. Additionally, we will eventually work towards making Jude's feedings more compressed. This means that he will work towards a goal of having periods of time when his tummy is fed and full and then periods of time when he is off of the feeding pump and not being fed. This will be a very long and carefully monitored process. Changes won't be made unless Jude's little tummy is ready.

Brian and I have been trained on how to use and maintain Jude's feeding pump. We have also learned how to place his ng tube, prepare his formula and give him his many medications. He is currently on 5 medications, a vitamin and a few supplements.

At this point we don't think he will come home with a need for oxygen support but if he does have this need we have also been trained on how to use that equipment.

He will receive physical therapy, occupational therapy and speech to help him with his development and feeding by mouth. At this point we are not sure how often he will receive these but we are already excited about meeting his new team of therapists. We know that they will be a big part of Jude's life for the coming months or years.

We will continue to have follow up appointments at MUSC and a few at McLeod Hospital. He will continue to see many of the specialist that were a part of Jude's care while he has been at MUSC Children's Hospital.

Jude will also be getting a helmet to help shape his head. Jude's little head is a little misshapen because he spent so much time on his back when he was intubated and on ECMO. He will be fitted for this soon after we arrive in Florence.

Is Jude being fed by mouth at all right now? 

A little bit. So, Jude struggles a little bit with oral aversion (from having all kinds of tubes down his throat during his medical journey) and has a sensitive gag reflex. Through most of Jude's life we've all (parents, our awesome OT-Katy and Jude's nurses) been working really had to try to encourage positive mouth experiences. And thus far he continues to be receptive to happy mouth activities. Recently, he has been taking very small bites of pureed baby food. Overall he does pretty well with it but does have an occasional gag or throw up during the eating session. It is just something that we are going to have to work at every day...and I am sure that Jude will eat by mouth eventually. It will just be a slow process.
A bit of good news to share about Jude's eating abilities: Today Jude had a swallow study to see if he is capable of protecting his airway when swallowing foods. The speech therapist wanted to make sure that Jude was able to protect his airway when eating foods. The hope was that he would not aspirate into his lungs when attempting to swallow. Jude successfully swallowed both pureed foods and thin liquids (water)! Hooray! Huge praise! This gives us the "go ahead" to continue our practice with purees and now we are able to start practicing with thing liquids too. Previously we were not doing thin liquids at all because we were not sure if he was swallowing them properly. But now we will be able to work with Jude's therapists to take thin liquids orally...such good news!

Are you nervous about Jude leaving the hospital?

Yes and no.
Mostly we are just ready to have our family all together again. Jude is 6.5 months old and therefore we are quite certain that it is time for our little man to starting living his life outside the MUSC Children's Hospital. We are ready to leave hospital life behind but we are nervous about what might happen when we are home alone with our little guy. We certainly wish that we could have a nurse with us at all times to care for Jude if he needs help BUT we are confident that Jude is ready to start his life at home.
We feel a little more confident about him coming home especially since he appears to have enough lung strength to come off of O2. Our biggest worry is about Jude's digestive system. We worry about bowel obstructions and digestive problems. But I'm already praying that God will make any health problems with Jude very evident so that we catch them before Jude gets into serious medical trouble.
We are also nervous about exposing Jude to germs. A cold, virus or any illness could be especially rough on our little guy. Whooping cough alone could kill him. So we will be very cautious about his environment and the people he is around.

When can we visit Jude?

That is a tough one. As mentioned above, Jude can become very sick from a little cold or virus....and a big illness could be a HUGE set back for him. And as you can imagine, we are a little nervous about exposing him to anyone.
On the other hand, it totally breaks our hearts that we can't share him with all of you in the way that we would like to. We really wish that we could have a BIG "Jude is coming home!" party so that all of you could meet him and witness the amazing miracle that the Lord has given our family (and all of you)!!
So, when we arrive in Florence with Jude sadly we are going to limit visitors. (Insert big sad face here) We LOVE all of you, but we also want to make keeping Jude healthy a BIG priority. (and I know all of you feel the same way) We are not totally sure what our limits will be quite yet but we hope that you will understand our desire to be cautious with our little guy. We hope to do a more detailed post about visiting and seeing Jude in the next few days. (We plan to consult with the doctors about this)
Our hope is that we can throw a BIG party for our little guy next summer and we will all CELEBRATE and REJOICE of all the amazing things that the Lord has done in Jude's little life.

What can we do to help you when you get Jude home and settle in to your new home in Florence?

Prayer is our biggest need! We know that this will be a big transition for Jude...for us...for Annabelle...for my parents...our extended family...and our new community. Please cover us in prayer just as you always have.

A few of you have offered meals to help make the transition to home easier. And we are truly thankful. We are not quite sure what life at home with Jude will look like but having a prepared meal at home will be very helpful. Thank you!


Today I remembered what I was feeling the day that Jude was reintubated in the NICU. I remember thinking that I may never see my sweet Jude again without a ventilator tube down his throat. I remember thinking that his death was very near. And I was just SO sad.

But I also remember feeling comforted by the fact that all of Jude's sweet nurses and all of you would surround us with support and prayers if that day came.

But now, here we are...REJOICING together that Jude is nearly home.

Alive and on his way home soon.

And how sweet it is to be surrounded by so much love and JOY!

Thank you for following our little guy...we can't wait to share news of his homecoming!


  1. Also, call Florence Disabilities and Special Needs Board and ask for the Early Intervention Supervisor when you get home.(I work for Oconee County DSN Board with Brian's Aunt Pat Smith as the Family Services Asst.) Jude should qualify for services to help him get caught up!!! We have a son with Down Syndrome (31 yr old now) and Early Intervention services is a blessing in SC!!!! So excited for you and praying!!!!

  2. Dear Rose,
    The last part of this post has tears in my eyes. You are going HOME! Samuel came home this time last year and it was scary. I remember trying to convince his nurses that they should come "visit" wink wink and they would laugh but I was like, "um, no REALLY!!" :)

    I understand so well the need to limit visitors. I have developed a rule that everyone washes their hands when they come into our house. Children are really good about it. Grown-ups, not so much. It's not a criticism of their cleanliness but I can't help thinking of how many doorknobs they touched with those hands before they came in... and what an illness could mean for our Sam.

    Glad that you will have good support services at home. That is a blessing. And meals. And prayer. So so glad for you and your family.

    Mama to Samuel, lcdh, Feb1/11