Moving Right Along...

So, how many of you thought of the Muppet Movie when you read the title of my blog post? :)
I guess I've been hanging out with a Muppet obsessed toddler lately.

Anyways...happy Thursday to you all!

Jude had a great days yesterday and today. Here are the highlights:

• Jude is OFF his fentanyl drip! Yipee! We are thrilled that he is offically off the heavy meds that he has been on for so long. He is not totally off addictive medications yet (the fentanyl and versed were replaced with morphine and atavan) but he is no long receiving drip medications. Instead he is receiving scheduled doses of morphine and atavan. We are so thankful for his progress with weaning those tough meds!
• Jude got a tub bath today!!! For nearly two and half months Jude has only received sponge baths so today was a HUGE victory in the stinky baby department! One of our favorite nurses, Caroline, was determined to get our little man in the tub since his PICC line in his foot is finally out. Jude seemed to enjoy the bath overall and only got a little fussy towards the end. It was so sweet to hold my sweet little clean baby after his first bath!
• Jude is continuing to do amazing with his PT and OT! We are so pleased with his progress and his ability to tolerate more and more activity! Our little guy enjoys being social so visiting with the PT and OT ladies is right up his alley. 
• Jude is still on CPAP and this is something that we would love to see change as soon as possible for many reasons. 1) Because it would mean that his lungs are growing stronger and more capable of working to support him 2) Because he is just so dang tired of having the annoying prongs in his nose all the time (and he is getting strong enough to knock them out himself!) 3) Because the frame that sticks to his face to hold the CPAP is irritating his skin and making him even more annoyed with the CPAP. 4) Jude cannot be discharged or transferred until he gets off of CPAP (along with other things) So, will you join us in praying for Jude's lungs to get an extra boost that will help him get off CPAP as soon as possible?
• The docs are continuing to increase Jude's breast milk feeds through his TP tube. He continues to tolerate them pretty well. We also got good news from one of the studies done on Jude's stool. He is not having any trouble absorbing the good fats that his body needs to take in. What great news! Please continue to pray that my dairy-free diet is effective in helping Jude's digestion.

 Overall Jude is making some wonderful progress....but he still has quite a way to go before he can head home so we are still asking for your prayers. Please continue to pray that Jude will be protected from infections because he remains at risk because he has been in the hospital for so long and because he still has a PICC line in his head. We just want our little man to stay as healthy as possible.

We are so thankful for all that the Lord is doing in Jude's life!

 Praise to the Giver of good things
Merciful Father, holy King
Join with the angels, sing out loud
Praise Him who reigns above the clouds

A few pictures to make you want to pinch some cheeks

 Sitting up while using the vapotherm. As you likely notice he has the bar on his face still from the CPAP. He has quite a bit of of stuff on his face/head still...can't wait to see his sweet face without all of this equipment! You can also see where he scratched his head trying to grab the CPAP/bar because it bugs him so much.

 Looking into mommy's eyes. We love having "talks" and just spending time together.

This is Jude snoozing away on CPAP and wearing a cute little outfit! LOVE his cubby little arm!

A busy boy!

Hi!
Tonight I am weary...
I just want to be able to pick up my son and hold him whenever I want to. I want him to be free of all his medical equipment so that he can move and play like a normal little baby. I want to have him at home with us. Tonight he was so upset and I couldn't comfort him quite like I'd like to...I just wish that I could make him happy and cozy in our little home. This journey has be hard and Jude's hospital stay has been so long.

But I know that the Lord is with us. Everyday. Every step. And I'm trying super hard to remember that God will give each of us exactly what we need each day. Please pray for us.

Despite my weariness, Jude has been working and playing hard. We are quite proud of Jude and excited about the progress that he continues to make. The Lord is good and we are thankful.

So what is new with Jude?

• Currently he is really enjoying and working hard with his physical therapists! Jude sat in a little chair today (a supportive chair) and he LOVED it. He also sat up in my lap the last two times that held him. He loves looking around the room and "holding court" with all the nurses, doctors and therapists. 
• He is also working hard with the occupational therapists too. Jude's been much more accepting of positive oral stimulation that is helping him get more and more ready for feeding in the future. This evening he allowed his paci to go even further into his mouth today (this is something we've been working really hard on). We are so excited about his progress. 
• Jude is nearly off of his fentanyl. Today they weaned him again and I think that we will see him completely weaned from his fentanyl in just a few days. After he is weaned from this medication he will go to scheduled morphine. We are thrilled that this is going SO well.
• They are continuing to increase Jude's volume of feeds and we continue to hope that his digestion and absorption will improve. It is too early to tell if my dairy free diet is improving his digestive health. We hope to see an improvement after I've been banning dairy for three weeks. (Many of you have asked how it is going...it's been tough but do-able. I complained quite a bit during my first few days of "milk detox" but I'm starting to settle into avoiding dairy. It has been really interesting to learn about the many items that contain milk products! Many thanks to those of you who have offered advice and recipes about dairy-free foods)
• Jude is still on CPAP but the doctors and respiratory therapists have been letting Jude "trial" on vapotherm (another form of respiratory support that is a little "stronger" than an oxygen nasal cannula) for a few hours each day. Jude really enjoys being on vapotherm because he does not have the long prongs from CPAP that agitate him so much. 

How you can pray for Jude:

• Please continue to pray for Jude's digestion and his absorption of his food. 
• Please continue to pray for Jude's lungs to get stronger so that he can move from CPAP to vapotherm or oxygen nasal cannula.
• Please pray for Jude's therapies (PT and OT) as his activity with them continues to increase. Please pray for his development too. He is nearly three months old now and he is interesting in getting more active and enjoying his environment but it is tough to do this when he has so many medication lines going into his PICC line in his head. I honestly think that he is starting to get bored with being in bed and seeing the same things. I wish I could just walk him around and let him check out his surroundings. 

A friend sent me the words to a song today (one that I've actually not heard before) and some of the lyrics really stood out to me:

In the quiet, in the stillness
I know that You are God
In the secret of Your presence
I know there I am restored

None but Jesus - Hillsong

75 Days

Today marks 75 days with baby Jude!

So what's new?

Jude's continuing to slowly progress with his breathing: He's on a very low pressure setting on CPAP and his oxygen setting is currently at 25%. Since he's getting relatively little respiratory support from CPAP, he's being trialed on Vapotherm, which can be described as high flow nasal cannulas that supply oxygen-rich humidified air. For the past two days, he's been on Vapotherm for four consecutive hours each day, and he's handled it reasonably well, although he's experienced a slightly increased respiratory rate when on it. We're hoping and praying that he'll continue to get stronger so he'll be able to tolerate Vapotherm and/or nasal cannulas and get off CPAP soon!

With regard to weaning of his medications, Jude has been weaned completely off his sedative (Versed) and has been further weaned on his pain medication, fentanyl, which is a synthetic narcotic similar to morphine, but more potent. Since coming off Versed completely, Jude has begun to receive scheduled doses of Ativan (lorazepam), a drug that eases his anxiety and allows him to relax. In addition, Jude is also receiving scheduled doses of clonidine, which is often used to treat high blood pressure, but, in his case, it acts as a bridge medication to allow him to wean off his other aforementioned meds more easily. We're very excited that he's continuing to make progress with his weaning! Please pray with us that he can continue weaning at steadily in the coming days and weeks!

Jude is still on another med called sildenafil, which helps relax and expand his pulmonary blood vessels, allowing greater blood flow in the lungs. Sildenafil is actually another name for Viagra (!), but fortunately for Jude, it can help relieve pulmonary hypertension in addition to the other, er, "issue" that sildenafil is often prescribed to treat.

The area for which we most cover your prayers is Jude's digestion and absorption of his food.

Jude is currently receiving a continuous flow of breast milk (14 milliliters/hour) through a transpyloric tube, which delivers his food to the upper part of the small intestine, just past the stomach. Additionally, he is still getting electrolytes and certain other nutrients from TPN (bright yellow clear liquid in a bag) and fat from intralipids (cloudy/opaque substance -- looks like a syringe full of lard to me), both of which are delivered to him through a central catheter. (TPN and/or intralipids can eventually cause liver damage if given for too long, but Jude has handled it very well, so we're told. Please pray that this continues to be true.)

Testing over the last few weeks has shown that Jude has continued to have problems absorbing some of the contents of his breast milk. Over a recent 3-day stretch, some of Jude's stool was collected each time he pooped, and the samples were then sent to the lab for what's called a fecal fat test, which will tell us the percentage of fat that he's not absorbing.

One of the reasons why Jude may be having problems absorbing his food is that his intestinal villi, little protrusions that help absorb food in the bowel, have atrophied because Jude didn't have food in his gut for the first 6 weeks of his life. As Jude continues to have his bowel stimulated through feeds, we're hoping that his villi will continue to grow back and reverse the atrophy he previously incurred. However, quite a bit of time has passed since his feeds started, and Jude's doctors are wondering whether something else accounts for his malabsorption.

Since there is suspicion (although, as yet, no certainty) that a milk allergy or perhaps lactose intolerance is creating problems with Jude's digestion, Rose has begun a dairy-free diet. (For those of you who are wondering, a dairy-free diet doesn't just rule out milk, cheese, and other obvious foods that have milk as an ingredient; rather, it rules out anything that has milk, milk derivatives, milk proteins, etc. In other words, there's a lot of stuff that Rose can't eat.) Hopefully, over the next few weeks, we'll get a better understanding of exactly whether milk or lactose is a cause of Jude's problem.

Despite being concerned about Jude's progress, particularly absorption of his nutrition, we are still abundantly thankful that he is alive and with us after surviving so many problems and difficulties. Please join us in continuing to give thanks to God for Jude and for the miraculous work that He is doing both in and through our little baby's life.

     I will extol you, my God and King,
        and bless your name forever and ever.
    Every day I will bless you
        and praise your name forever and ever.
    Great is the LORD, and greatly to be praised,
        and his greatness is unsearchable.
   
(Psalm 145:1-3)

Switching things up!

Hello!

Thank you for praying for Jude's digestive system over the last two days. We are certainly appreciative that so many of you are continuing to keep up with Jude and his adventures!

The Lord is answering our prayers but in a different way. Instead of running the test to check on Jude's absorption status they decided to take a different approach for resolving Jude's tummy troubles!

Below you will find my attempt at explaining what was discussed in rounds with the doctors today. I apologize if it is hard to follow or understand. I am super tired today and I am terrible at explaining medical stuff (my wonderful hubby on the other hand is incredibly capable). So, please bear with me!

First, let me tell you that Jude is receiving 10ml of breast milk continuously per an hour. He is also receiving TPN feeds a.k.a. IV nutrition.

So, when I walked into rounds today Jude's doctor said, "Ok, Mom. We have a lot to talk about today!" I was so nervous. I already had Jude's TPN feeds on my mind because Brian and I were talking last night about the risks of being on TPN feeds too long. TPN feeds can do damage to Jude's liver if he is receiving them too long. Luckily, Jude's test to see how his body is handling TPN feeds indicated that Jude's body and liver are handling being on TP feeds quite well!

Now, let me also warn you...I am about to talk about stool/poop a lot. Jude will likely hate me for this one day...but his condition at this point cannot be talked about without talking about his diaper filling capabilities. So, you've been warned!

The doctor said that she spoke with one of the doctors from the PICU about Jude's struggle with feeds. From this conversation Jude's doctor came up with several different approaches to figuring out Jude's feeding/digestive issues.

The PICU doctor explained that with older/bigger babies with intestinal/feeding problems similar to Judes they do not run the tests to measure how Jude is absorbing my milk. Instead the PICU docs focus on if babies are "stooling out". Stooling out = pooping too much and poop that is too runny. And at this point Jude is NOT stooling out.Jude's doctor has decided to take this approach with Jude because it is essential that he comes off TPN feeds as soon as possible and Jude really needs to start making some progress with getting mommy's milk in his little body!

Based on this, here is the new plan for Jude's eating/pooping:

• They will not being doing the absorption test, but they will be doing a fecal fat study to rule out any other problems that Jude may be experiencing in his digestive system.
• And the biggest one: The doctors want me to try a non-dairy diet because there is a chance that Jude might be allergic to cow's milk. (besides the tummy troubles, Jude also developed an eczema like rash on his face, chest and arms which also may indicate a milk allergy) So, tomorrow I will be meeting with a nutritionist to discuss how I can change my diet so that dairy products will be eliminated from the breast milk that Jude is receiving. 
• There are a few more options for figuring out Jude's milk/feeding puzzle if the cow's milk elimination doesn't seem to resolve his problems. But I won't jump into those right now. Instead, I will share those possibilities if the doctors decide to use those methods. Right now we are just hopeful that the cow's milk elimination will help!

Now, for some good news!
Jude is OFFICIALLY off his sedative! Yippee!!! He is now receiving Atavan every four hours in place of his the sedative he just weaned off of. Eventually they will space out his Atavan doses to 6 hours, 8 hours and so on. This is a HUGE step for Jude in his process of weaning off the medications that he has been on for so long. YAY!! Tomorrow they will take out the PICC line in his foot...which is great news and means that he has one less site for potential infection.

What you can pray for:

• Jude's tummy to respond to the change to my breast milk. Pray that the removal of cow's milk will help resolve his tummy troubles. It will take up to two weeks for milk products to "leave" my body so the changes may be slow.
• Pray for me as I change my diet. Those of you who know me well know that I LOVE milk products. Milk, cheese, yogurt....anything with milk products are likely some of my favorite foods. No matter what I am going to do this because it may mean that my little guy can really begin to eat!! 
• Please continue to pray for Jude's respiratory progress. We would love to see him come off of CPAP soon! He is doing well on CPAP but we don't want him to stay on it forever. Pray for his little lungs and pray that they will get stronger each day!

Thank you friends!!!

I leave you with the words to a hymn that was sung at our home church this Sunday (a dear friends of mine sent me the bulletin) and that was also sung at the last church service I attended before Jude was born. I love this hymn and I usually cry through it. I hope it draws you closer to Him as well.

O the Deep, Deep Love of Jesus

O the deep, deep love of Jesus, vast, unmeasured, boundless, free!
Rolling as a mighty ocean in its fullness over me!
Underneath me, all around me, is the current of Thy love
Leading onward, leading homeward to Thy glorious rest above!

O the deep, deep love of Jesus, spread His praise from shore to shore!
How He loveth, ever loveth, changeth never, nevermore!
How He watches o’er His loved ones, died to call them all His own;
How for them He intercedeth, watcheth o’er them from the throne!

O the deep, deep love of Jesus, love of every love the best!
’Tis an ocean full of blessing, ’tis a haven giving rest!
O the deep, deep love of Jesus, ’tis a heaven of heavens to me;
And it lifts me up to glory, for it lifts me up to Thee!

Prayers for feeds

Happy Monday to all of you!

I am coming to all of you once again asking for prayers for Jude.

As I have mentioned in previous posts, Jude's had quite a few struggles with his oral aversion and absorption of the milk going into his body. Today in rounds with the doctors and the medical team we talked about the results of a test that they did on Jude's stool to see how well his little body was absorbing mommy's milk. Jude is not absorbing the milk very well at this point.

So, today the docs decided that they wanted to keep him at 10ml of milk continuously over an hour. But tomorrow they will re-run the test to see if there has been any change to his absorption status...if he is still absorbing poorly they may back his feeds down again. Maybe by half. :(  And they may run even more involved tests if needed.

So, please join us in praying for Jude's little digestive system. Please pray that his little tummy will "wake up" and process my milk properly. We truly want Jude to be able to eat and accept milk for his food instead of IV nutrition (which he is currently receiving in addition to the 10ml of milk).

Today, Jude had an overall good day. He was quite fussy at times but mostly he settled down after being comforted and loved on. They decided to wean more of his medication today and they also weaned him a little bit on the CPAP. Jude is making slightly bigger baby steps these days. We are so proud of him and excited for his progress! Please pray that he continues to rise to the challenges that the doctors place before him. We want Jude to wean off his CPAP and off his medication but we are also nervous for him each time he faces a big challenge. Please lift Jude up in prayer as he keeps making little steps towards home.

    He put a new song in my mouth,
        a song of praise to our God.
    Many will see and fear,
        and put their trust in the LORD.
(Psalm 40:3 ESV)

Window Seat!

Happy Sunday to all of you!

It's been a few days since our last post, so I wanted to give you a quick update on how Jude is doing.

In my last post I shared some new things the docs were trying out with Jude...so, here comes the bullet list again! :)

• The "bridge" medication has been very helpful in encouraging Jude's little body to tolerate the weaning of his original medication. He continues to have withdrawal symptoms but they are not as pronounced as they were more than a week ago. We are thankful that the "bridge" medication has been helpful for Jude and we are hopeful that it will continue to help Jude take steps towards being medication free!
• We can't say for sure that the medication used to prevent/treat Jude's pulmonary hypertension (PH) is working but it does seem that Jude is more comfortable and less tense. As I mentioned before, we will know more about the medications effectiveness for Jude in a few weeks. Please pray with us for these results.
• Jude continues to struggle with his oral aversion, but Brian and I (along with Jude's occupational therapists) have worked with Jude over the last several days to encourage good oral stimulation. This afternoon Jude allowed more oral stimulation with his paci than I've seen in quite some time. It was encouraging to me and left me feeling a little more hopeful about the progress that Jude is making with oral stimulation. One of Jude's occupational therapists explained to me that babies from newborn to three months old usually have the natural instinct to want to suck/nurse/enjoy a paci....but after three months they CHOOSE to continue to suck/nurse/enjoy a paci. So, I have this fear of Jude hitting the three month mark without displaying the desire to suck/nurse/enjoy a paci. I KNOW that he can eventually learn the desire and want to CHOOSE to suck/nurse/enjoy a paci...but I worry a lot about it. Please pray for Jude's oral aversion and his innate desire to suck/nurse/enjoy a paci (how many times can I type that?!). Please pray that I will relax and trust the Lord's plan for Jude's future as an eater!
• Jude's bed is now by the window in the NNICU! The nurses thought that getting Jude by the window would allow for Jude to start "working out" his days and nights. Our little man is really enjoying the sunshine and cannot get enough of the sunlight peaking through during the day. I love watching his little eyes looking out the window when I hold him. I talk to him about how much he will one day enjoy playing in the backyard with his big sister. 
• Jude is GROWING! He is already over 12 pounds! Big boy!

I also wanted to ask all of you to pray for Baby Bobby. I don't know him, nor do I know his parents but I've been praying for this little guy since he arrived in Charleston for his surgery. We know that the Lord is with baby Bobby and his family and we want to surround them with prayers tonight. Will you join us? Here is a link to their facebook page with specific prayer requests/updates:  https://www.facebook.com/pages/Pray-for-Baby-Bobby/239378372786099

Goodnight, dear friends! I hope to post some new photos of Jude soon! I am leaving you with another hymn that I love and that has been on my mind throughout the day today. I am so thankful that the Lord is providing me with verses and lyrics to remind me of his presence and love.

O the deep, deep love of Jesus, vast, unmeasured, boundless, free!
Rolling as a mighty ocean in its fullness over me!
Underneath me, all around me, is the current of Thy love
Leading onward, leading homeward to Thy glorious rest above!
- S. Trevor Francis