Thursday, February 9, 2012

Changing the meds!

Hello friends,

Got an update for you!

I am going to give you a bullet list tonight because I am feeling a little brain dead this evening:
  • Yesterday they decided to begin using "bridge" medications to help Jude wean from his current medications a little easier. Basically they introduced a new drug that will help the weaning from his current medications be a little less difficult in hopes of weaning him faster. They introduced his "bridge" medication last night and they already weaned him a little bit today. The change was significant from my perspective. He was still a little fussy but he calmed MUCH easier. Please join us in praying that this technique will be effective and that Jude will take to this process well.
  • This morning Jude got a visit from the cardiologist to re-evaluate his pulmonary hypertension (PH) status. Jude's PH remains on the lower side, but they are a little concerned with the very slow increase that seems to be happening. They think that this may be impacted Jude's overall health and they'd like to take preventative measures (medication) to combat the PH before it could get out of control. At this point Jude doesn't need this medication, but the docs would like to try it out to see if Jude's little body could benefit from it. We certainly don't want the PH to get out of control because the medications that would be needed to treat PH if it were severe are scary and PH can be deadly. Please pray that this medication will be helpful in treating Jude and that his body will respond well. Please pray that his PH will continue to remain minimal. The docs plan to re-evaluate everything in around three weeks to see if the medication has been helpful. 
  • Jude is still struggling with his oral aversion. Basically, Jude is not a fan of having things in his mouth because up until this point everything that has been in Jude's mouth has been uncomfortable and distressing (ventilator tubes, feeding tubes, etc.). And as you can imagine, it has been very difficult to introduce anything positive to Jude's little mouth (paci, breast, bottle nipple). So feeding is going to be a big struggle for Jude. The occupational therapists have been working with Jude and I've been using the techniques that they've been teaching me to help Jude feel more comfortable with happy things in his mouth. It's tough and a very slow process...and some days go better than others. Will you please pray for Jude's oral aversion? Please pray that he will begin to feel accepting of some of the good things that can happen with your mouth (mommy's milk)! Pray for patience and stamina for me. It is easy for me to feel defeated and worried about how Jude will do with feedings in the future. 
  • Please continue to pray for our little family too. We are feeling quite weary these days. We were running at full tilt in the beginning and now we are facing the long, slow journey. Honestly, it is really hard. We miss Jude every time we leave him. We are missing home. We are missing each other. We miss the normal pace of life. We take each day one day at a time and we do our best to trust in the Lord daily for our steps.
  • Many of you have asked us if we are planning to transfer Jude to Greenville Hospital any time soon. The answer? We really don't know. Some days we think that it would be a good idea and some days we think that staying put is better. We are currently taking time to pray and evaluate what would be best for Jude's health and long term goals. Please join us in praying for this...we truly covet your prayers. It is such a hard decision. 
  • Please join me in praying for two families that contacted us this week about their child's recent diagnosis of CDH (both found out at their 20 week ultrasound). My heart falls to my feet each time that I hear about a new sweet baby that will face the tough CDH journey. Oh! How I wish that CDH would no longer exist.
Well, I'm going to try to get in a little R & R. Thank you for continuing to pray and encourage us. Your emails, notes, calls, texts, gifts, meals and visits continue to boost us and remind us that we are loved by many and by our Lord.

 Let all things their Creator bless,
And worship Him in humbleness,
O praise Him! Alleluia!
Praise, praise the Father, praise the Son,
And praise the Spirit, Three in One!
Francis of Assisi


  1. Rose, I am praying for you now. May you have the strength you need and the answers to the difficult decisions you have to make. Phillipians 4:13

  2. Still sending prayers your way and will continue to! Praying especially that Jude's oral aversion decreases steadily and that you are given whopping doses of patience and determination in the feeding dept!

  3. Praying for your decision! I don't envy you at all having to decide to stay in Charleston or come to Greenville. For us, there never was a decision; Rebekah's cardiac condition mandated a stay in Charleston until she was stable enough to be discharged for home.

    Also praying that Jude begins to accept some oral stimulation. Rebekah actually came home with an nG tube, and while I hated the tube, I was thankful that it allowed us to bring her home (finally!). She is still not a great eater, and had a g-tube placed at 3 months (which we still use nightly), but we are so thankful that she has come such a long way from those early oral aversions. Praying for strength, peace and calm for you all. ((hugs))

  4. I can only imagine how tired you are. Thinking of you and checking for updates often, and sending prayers for you all every day!

  5. I will be praying for your friends that have contacted you. I can't imagine what they must feel. So glad that they have you and Brian to lean on during this time. I was so glad to have my sister to lean on when we got Griffin's diagnosis!
    Thanks for all the details on Jude. Lifting him up daily!