Wednesday, April 4, 2012

My sweet boy

Hi friends,

By now many of you know (from my Facebook post) that Jude was intubated today and placed on the conventional ventilator.

When I woke up this morning, I had no idea that this was in the cards for my son. But now that the day has passed and Jude is back on the ventilator I am quite confident that this was the best choice for Jude.

If you've been following Jude's story over the last week or so, you may have noticed that Jude has continued to struggle more and more each day. Every day they've had to increase his settings on the Vapotherm and everyday we grew more and more nervous about Jude's respiratory status.

This morning, when I went to rounds I learned that Jude had another poor blood gas in the early a.m. hours and that a few other test results were a little concerning. I was also told that there would be a meeting between many of Jude's doctors over the last few days to discuss his care for the rest of this week and over the holiday weekend. The attending doctor felt that it was very important to make sure that everyone who cared for Jude in the next few days were well informed about Jude's status and what would be best for his care.

After rounds I spent the day snuggling Jude and enjoying my time with him. He gave me several big smiles   and I simply enjoyed looking into his big blue eyes. Despite his terrible cold and trouble breathing he was in fairly good spirits.

The doctors met in the early afternoon and after the meeting I was asked to join them to get a summary of what was discussed. (I hope to explain this as clearly as possible but I am oh so weary and my brain is just not working like it used to.) Basically, all of Jude's doctors are concerned about Jude's respiratory status. He has been trending towards respiratory distress over the last few days and it made them very nervous. As we shared before they were hopeful that they could avoid re-intubation but after the meeting it was decided that intubation would be the most beneficial to Jude at this time.

You see, Jude is quite a strong boy and he puts up a BIG fight then his nose or mouth is touched (This comes from the many times that tubes, tape, etc. were placed on or down his nose or throat.) and Jude is a BIG boy who requires quite a bit of sedation when anything is placed in his mouth or nose. And he has quite a tolerance for the meds that they've given him in the past. Because of the reasons I mentioned the doctors were fearful of how things might go if/when Jude experienced a respiratory episode or decline that required him to need a ventilator to breathe. They were worried that they would have to force the ventilator tube down his throat in an emergency situation and that Jude would put up a terrible fight which would make his respiratory emergency even worse. And on top of all that he would not have the amount of sedation that would make him most comfortable during such a procedure. And all of this combined could place Jude in an even more precarious state.

So, it was decided that Jude would be intubated again in a safe environment with sedation provided by an anesthesiologist. The hope is that this intubation and time spent on the ventilator will provide a way for Jude's lungs and body to rest and heal. As mentioned in earlier posts, the hope is that Jude will be able to tolerate breast milk feeds (which are being tolerated well thus far and will continue while Jude is intubated) which will help him grow bigger and stronger for his 2nd repair surgery. And this is still our hope! We want his lungs to recover as best as they can, we want him to grown bigger and stronger and we want his insides to heal as much as possible so that he can be as healthy as possible for surgery.

My heart just broke hearing this news. I was so sad that the boy who was smiling, kicking and looking into my eyes this morning would soon return to a sedated state with a tube in his throat. I was also sad that Brian could not be with Jude before he was placed back on the ventilator. I hate that Brian has to be away from his son for several days of the week.

After the meeting, I walked back to Jude's bed and held him. I just wanted to spend a few more minutes with him before he was sedated. Honestly, I was and still am afraid that those many have been my last moments with Jude awake and alert. I felt like my heart was breaking in two. My heart ached for Brian too because I realized that Brian was not getting the opportunity to hold him before Jude was intubated again.

I left the NNICU and made a few phone calls to family...prayed for Jude a drink and took a few minutes to catch my breath. Soon Jude's nurse, Meghan, appeared and let me know that his intubation went smoothly and that Jude was now safely on the ventilator. I went in to see him and he was resting comfortably. The plan for now is to let Jude rest and make sure that he is medicated enough so that he will not pull out his ventilator tube.

Please pray that the resting that Jude will do on the ventilator will be effective and restoring. Please pray that the doctors are able to find a happy place for the amount of medication that Jude will need to keep him from extubating himself but that he will also still be able to be awake and somewhat aware. Please pray for his comfort too. Please pray that he will be protected from any potential infection or illness. Please pray that his feeds will continue to go well and that he will grow bigger and stronger than before. Please pray that Jude will feel the Lord with him always.

And if you can, please pray for our family. We are truly weary. We are weary in so many areas of our lives. The Lord is truly carrying us through each day. We miss each other so much...the weekly separation is tough. Annabelle misses seeing us when we are with Jude at the hospital. We miss her too. Please pray that when we rest that our rest is especially restful. Please pray that when we spend time together that it is full enjoyed. Please pray that we will feel the Lord with us always.

I hope I've conveyed today's events as best as possible. We truly, truly feel blessed to be covered in prayer. It is such a gift to know that when we ask you to pray we know that you will go to the Lord on our behalf. Romans 8:26 says:  "Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words." I feel like the Spirit is  also working in all of you to pray for us in ways that we've not thought of. Thank you for faithfully going to the Lord for us.

Until our next blog...


  1. Praying for you now!!! All the way from Washington State. My heart breaks for you guys. Continue to rest in the Lords arms as he comforts you in such a hard time.

  2. Was just sitting here trying to think what to type... what could I say that would encourage and comfort you... and I have nothing, absolutely nothing... I am just thankful that the Lord is the Great Comforter and the Great Physician and that His Word says it all. We continue to pray. Grace and peace, emily

  3. Thank You Lord, that You will come and heal Jude, in the name of Jesus Christ. Amen. I picture Jude as I read a book called, "Heaven is for Real." I think that Jesus is holding him and that His angels are ministering to him. When you pray, have NO doubt that Jesus hears you and will answer you. He will protect Jude and comfort him. Have NO fear. This is very hard. It will take great discipline, but push doubt or fear away if they are near you, and being free of them will help the Spirit work His miracles in you and in Jude. Hugs.

  4. Jude is a precious gift from Heavrn who has touched so many lives from far away. We never know our Father's plan until it is revealed to us. My heart tells me that he and Jude have a plan.

    Constant prayers continue for you all and for Jude's healing.

    Colt's Mimi

  5. Praying for you all! My heart broke today upon reading your post. But not because I don't believe that you will again hold Jude with him being awake and alert and tube free. I believe with all my heart that he will get through this upcoming repair surgery with flying colors and surprise everyone as he is one of the strongest babies I have read about. My heart broke in the same way as it breaks everytime I read a post like this when a baby (or toddler) reherniates and the parents bring in a smiling and happy baby or toddler and then post about the heart breaking site of seeing them intubated again after surgery. I have a 3 year old survivor and there was a fear of reherniation at one point. This was my fear and what I dreaded and pictured. But all those parents get through it just like you all will. Many, many prayers that Jude's time back on the ventilator is short and that he grows stronger and stronger every day and that when it comes time for his repair, that it will be done at the perfect time, and he shows everyone who's boss.
    Hugs and prayers,
    Mom to Dakota 12-25-2008
    RCDH survivor

  6. The very same God who conquered death so many years ago can bring Jude off the ventilator and directly back into your arms. I believe it.

    Praying feverishly for an Easter miracle.

  7. I am so sad with you... praying that what is unseen is greater and more beautiful than what we are able and allowed to see right now...

  8. Just came across your blog, praying for your sweet Jude and your family. I hope that Jude will be able to get the rest he needs and be strong enough to come off again the ventilator again soon! Our boys were born at 25 weeks and my son spent 4 months in the NICU. I remember all those ups and downs like they were yesterday. I pray that God will give you comfort and strength. Sometimes a whole day (or even hour) can seem so overwhelming, take it one minute at a time!