Wednesday, February 29, 2012

PICC news!

Happy Wednesday friends!

Rose here.

Just wanted to give you a quick update about Jude's progress today. And this one will be quick because this mommy is worn out!

  • Jude's PICC line is OUT! A whole day early! The new fellow today decided that it was time to get that PICC out and so he upped Jude's feeds by two mL (instead of one) putting Jude at "full feeds" this afternoon. So at 4pm this afternoon Jude became free of all his medication lines (he is now receiving meds through his tube in his nose that goes into his tummy.) and he is now free of a potential infection site. Yipee!! One more awesome step for Jude! Praise our sweet Lord! Jude will likely get a bath with a head/hair washing tonight for the first time. Poor guy hasn't had a full hair washing since he was born.
  • The doctors decided to wean Jude's settings on the Vapotherm again today and he seemed to tolerate the wean pretty well. He will likely hang out on this setting for a few more days before they try another wean....but this means that he is one step closer to being on an oxygen nasal cannula. (Keep in mind that he still has a ways to go though)
  • Tomorrow we will likely get the results of Jude's follow up echo from Friday. Please pray for these results. We are hopeful that the medication has been helpful in treating Jude's pulmonary hypertension. 
  • Jude rocked his physical therapy this morning. I was not there to see it but I was told by Jude's nurse (Hi Lesley!) that Jude sat in his little chair well and that he got on the mat and enjoyed some tummy time!
That is all for now! Thank you for your continued prayers for our cute little man. He has been smiling for us quite a bit now...I hope to catch it on camera for all of you. 

P.S. The pictures I mentioned in my last post will go up sometime on Friday (that is when I will get my computer back)

You make known to me the path of life;
in your presence there is fullness of joy;
at your right hand are pleasures forevermore.
(Psalm 16:11 ESV)

Monday, February 27, 2012

So much to say!

Hi friends!
Thank you for trying to continue to get updates on Jude. We are so sorry that it has taken us several days to put up a blog post. We are well overdue (many of you have called/texted/emailed to check in) on updating all of you on Jude's progress...and BOY has he made some progress!

So, here is the scoop:

  • Jude is off CPAP!! On Friday Jude was simply sick of being on CPAP. He was irritable and getting very worked up about having the long prongs in his nose. One of Jude's awesome nurses suggested letting him hang out on the vapotherm a little bit longer to give him a break from the prongs in his nose and then the next (also awesome) nurse suggested to the docs that they just keep Jude on the vapotherm overnight because he seemed so much more comfortable. And then it was decided that Jude was doing so well on vapotherm that he should just stay on it!!! Yipee! So, Jude has been on vapotherm since Friday and he has been doing so well that they have even weaned the settings down because he is not requiring nearly as much support. Can you believe this? What an answer to all of our prayers! 
  • The docs have continued to increase Jude's feeds every day and the hope is (if the Lord wills it) that by Thursday he will be at "full feeds". Basically, this means that he will be receiving enough milk to sustain him and that he will no longer need IV nutrition. So, the hope is that sometime after Thursday Jude will no longer need his PICC line. (They are already taking steps to change his medications that he receives through his PICC line to oral doses) Losing this PICC line is HUGE! This means one less site for potential infection. Additionally, this means that Jude is tolerating TP feeds well. Will you join us in praying for continued improvement for Jude's digestion? Will you start praying that Jude's body will handle being without IV nutrition well? And will you also go ahead and start praying for Jude's stomach? We know that they will soon begin trying to re-introduce milk to Jude's stomach (instead of his TP) and we'd really like for his tummy to be happy about mommy's milk. 
  • Jude is doing amazing with his occupational therapy! Today he wowed us all as he worked with his OT, Katy (hi Katy! :) )! Jude spent some tummy time on a mat, balance on an exercise ball (with assistance of course!), oral exercises and more. We are so pleased and so excited with his progress! We remain hopeful that he will continue with his desire to be active and engage in his therapies! Please pray that Jude will continue to grow stronger and stronger!
  • Nana Linda and Pop Pop (Brian's parents)  to visit this weekend and Nana Linda held Jude for the first time! Now both Nana's have held Jude and I am quite certain that both thoroughly enjoyed their time with our little man. (Pictures to follow soon- I am without my laptop right now)
  • Annabelle saw her brother again today! :) They had a great visit and held hands. Jude was awake this time so Annabelle had the opportunity to see our little guy moving about. She told us that she wanted to kiss him...but we couldn't let her. I can't wait for the day when they can snuggle up together in my lap! :) (Again, pictures to follow soon)
We are so thankful that the Lord has once again provided for Jude's needs and that He ordained for Jude to be with us. I am continually amazed at the amazing miracles that have happened in Jude's life. I cannot believe that we are on the other side of the CDH 50/50 chance of survival diagnosis. It blows my mind and fills me with such JOY. But I also ache for the families that have lost their sweet CDH babies and I worry for the families who are about to give birth to babies with CDH. Such hard places to be in. Please lift them up in prayer.

Thursday, February 23, 2012

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

Tuesday, February 21, 2012

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!

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'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

Saturday, February 18, 2012

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)

Wednesday, February 15, 2012

Switching things up!


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!

Monday, February 13, 2012

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)

Sunday, February 12, 2012

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, 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:

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

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

Monday, February 6, 2012

Two Months Old!!

Hi friends,

Rose here! Thank you for being patient for an update from us about Jude. The last few days have been busy and exciting for all of us.

As you can see from the title of this blog post, Jude is now two months old. We can hardly believe that our little man is already hitting this milestone. The last couple of months seemed to creep and fly by at the same time. Jude is growing well and is just over eleven pounds now. He is such a big boy and is already growing out of his 0-3 month clothing!

In other news, Jude and Brian had a boy's weekend! Brian spent all day Saturday and Sunday with Jude all by himself. They had some great "holding" time together and overall Jude stayed steady and content. Jude also got his two month shots!

Annabelle and I went home (for the first time since November 21st) for a quick overnight stay! While at home we enjoyed time with our dear community group friends over dinner, visited with our sweet neighbors and enjoyed a 3 year old birthday party at a fire station, and worshiped at our church surrounded by our church family. It boosted our spirits and reminded both of us that we are not forgotten and that one day the four of us will be together in our little home. It was so hard to leave home and return to Charleston but we also wanted to get back to our guys. They are pretty lovable, you know? :)

And the biggest news since our last post????

Our children met each other for the first time.

Jude and Annabelle holding hands = Brian and Rose with thankful and happy hearts!

For the past two months I have continued to say, "I just want to have my children in the same place" and finally it happened!

This was a day that we were not sure would come. Before Jude was born we were not sure if Annabelle would be able to meet her little brother or if he would even come home with us. I cannot believe that this day has come. Our hearts are full with thanksgiving and joy for the gifts that He has given our family in this journey.

Here are a few things about our visit that I thought you'd all enjoy:
- Annabelle wore her little face mask the whole time during her visit today. She was So well behaved and we were so proud of her.
-Annabelle asked to hold Jude's hand several times. Such a sweet moment for all of us.
- Jude slept through the whole meeting with a few little wiggles and squirms.
- Annabelle charmed all the nurses and we were told that they all thought that Jude and Annabelle look just alike.
- As soon as we left the NNICU Annabelle asked to go back so that she could hold baby Jude's hand again. Sweet, sweet girl.

We are not sure when they will see each other may be quite awhile...but it was such a blessing to have them together today.

So, here is what is happening with Jude right now:
- Jude is at a pressure of 6 and between 25% and 28% on the CPAP for the last couple of days. He is doing well hanging out at these settings and will hopefully continue to gain "lung strength" as the days pass.
- Jude is REALLY struggling with the recent weans from his pain medication. He struggled significantly with withdrawals today and required support from the PRN medications to help "take the edge off". He is quite uncomfortable and even at times mad. It's really hard for us to watch him have such a difficult time. Today he was crying, sweating, shaking, having difficulty sleeping and overall just upset.
- While I was away this weekend they increased his feeds to 6ml. He is continuing to tolerate his milk at this point! Yay!
- Jude has been riding in the Mamaroo ( the NNICU! He is a big fan of getting out of the crib and checking out the scenery while enjoying ride similar to a mini-ferris wheel. How fun!

What you can pray for:
1. Continued progress with his breathing on the CPAP. Ultimately, we would love to see Jude come off of the CPAP but we want his lungs strong and ready to come off. Please pray that his lungs will continue to grow stronger and ready to work!
2. Please pray for Jude's withdrawal symptoms from the medication weans. Please pray that the Lord will give him comfort and endurance to face these battles. He has a LONG ways to go before he can be weaned off the medication and I know it must be hard (especially since he is a baby) to endure this marathon. Please pray for little to no withdrawal symptoms for Jude with the weans he will face in the future. Pray that Jude will rest and get more sleep too. It's harder to face things physically when you are so tired.
3. Pray for our family as we are realizing that the journey ahead may be long and slow. We are anxious to get home but we also know that Jude's time in the hospital may be much longer than we anticipated.
4. Pray for Jude's breast milk feeds...pray that he will continue to tolerate and digesting the milk. Please pray that he will be able to conquer his oral aversion (babies get this after having so many negative things in their mouths such as ventilator tubes, feeding tubes, etc.) and that he will soon welcome milk entering his body through his mouth. 

Well, I am off to bed and already looking forward to spending the day with my cute kido

There is Joy in the Lord - Cheri Keaggy

There is joy in the Lord
There is love in His spirit
There's hope in the knowledge of Him
There's a fountain that flows
Like a river from heaven
Abounding in love to my soul

All blessing and honor are His
And all glory and power are His
Let all wisdom and strength
Be the Lord's in this place
Let all glory be given to Him

Friday, February 3, 2012

Bit by bit I'm getting better

Yesterday was a much better day for Jude!

He wasn't requiring nearly as much support from his CPAP (was down to 25% as of last night!). He wasn't nearly as fussy and he rested quite a bit. Nana Beth gave him some extra love since I was still out from being sick (I'm going to see him this afternoon!!) and he slept soundly while she rubbed his back and held his hand.

Brian is visiting with Jude this morning and I will try to update all of you on how Jude is doing after Brian calls me after he goes to rounds with the doctors.

Thank you for your prayers...we are all blessed to be surrounded by so much love, support and prayer!

Wednesday, February 1, 2012

Update 2/1/12 9:30pm

Hi folks,
Just wanted to give you another quick update. Jude seems to be doing much better now and is overall resting a little better. It is so hard not being able to hold my sweet boy while he is feeling bad!
I spoke with another one of our favorite nurses (Katie!) tonight and she said that Jude has calmed down a great deal and that he is now at 38% oxygen! What an improvement from earlier today!
Right now we know that the respiratory panel is negative so Jude does not have a viral or bacterial illness. And thus far the blood cultures for a blood infection are negative...please pray that they remain negative for 48 hours!
Everyone is wondering what caused our little guy to have such a freak out today, but no matter what we are thankful that he is doing a little better this evening. Please join us in praying that he will continue to improve.
To God be ALL the glory!

Update 2/1/12 3:15pm

Here is a quick update:

Basically Jude had a little bit of a rough night with quite a bit of fussing and de-saturations. He seemed to be doing a little better early this morning and was only requiring pressures of 7 and 24% oxygen. However, at some point later in the morning he really starting to struggle with his breathing and ended up on a pressure of 8 and 100% oxygen from his CPAP (the highest settings for Jude). This was quite a drastic and scary change! My mom was with Jude this morning (since I couldn't be because of my cold) and she said it was like a sudden switch with Jude's overall mood.

Because he was struggling so much, the doctors did several things:
1. They did an echo cardiogram to see if his pulmonary hypertension (PH) had showed up. The echo did not indicate any change in this...Jude continues to have little to no PH. (This is definitely a praise!)
2. They did an x-ray to see if he has any new lung collapse (he already had a very small amount). The x-ray indicated that there was a little bit more collapse, but not enough to account for Jude's need for 100% oxygen from his CPAP.
3. They switched out his "mask" for his CPAP from the nasal cannula to the long prongs. After doing this Jude seemed to get more comfortable and is now settling in at 80% oxygen. Pray that this change will continue to help him require less support.
4. They've taken samples of his blood to see if he has an infection. An infection could also cause some of Jude's respiratory problems. The cultures on these samples will be checked at 12 hours, 24 hours, 36 hours and 48 hours to see if they've grown anything. The docs have also already placed him on broad range antibiotics to go ahead and treat him in case he does in fact have an infection.
5. They are doing a respiratory panel to see if he may back a viral or bacterial illness too. We should know the results from this within 24 hours.  The doctors said that a cold for Jude can be super tough on him and could cause him to need this much support because of his smaller/sick lungs.

So, that is the update for now. As you can imagine, we are worried for our boy. He seemed SO happy and healthy yesterday. It is so hard to know that he is suffering a setback. Please pray that he will continue to feel better throughout the day/night. Please pray especially that he will not need to be re-intubated and placed on the ventilator again. If he keeps hanging out on the highest settings of his CPAP they may have to consider this.

I hope this will provide all of you with more specific ways to pray for Jude. I will update you as I learn more. We just want our little guy to feel better!


I don't have a lot of clear details to share right now, but Jude is struggling significantly today. I will post again when I can get better details after the doctors run a few tests to see what is bothering Jude.

Please pray for Jude.

Please pray for me because I can't be with him because I am sick.

Please pray for Brian as he is in the upstate working today.

Please pray for Nana Beth as she is with Jude at the NNICU for me. The docs can't share medical information with her so she must simply watch and love on Jude while they care for him.

Please pray that the Lord will give Jude comfort and rest instead of distress and discomfort. Please pray that the doctors can discover what is plaguing Jude right now.

I will post as soon as I can. For now here is a hymn that immediately came to mind after I got off the phone with the doctor:

I Need Thee Every Hour

I need thee every hour, most gracious Lord; 
 no tender voice like thine can peace afford. 
 I need thee, O I need thee; 
 every hour I need thee; 
 O bless me now, my Savior, I come to thee.

2. I need thee every hour; stay thou nearby; 
 temptations lose their power when thou art nigh. 

3. I need thee every hour, in joy or pain; 
 come quickly and abide, or life is vain. 

4. I need thee every hour; teach me thy will; 
 and thy rich promises in me fulfill. 

5. I need thee every hour, most Holy One; 
 O make me thine indeed, thou blessed Son. 

Sick Mommy

Thought I had allergies, but I am pretty sure that I have a cold. Not going to be able to see my little guy today because I don't want him to get sick. But Nana Beth gets to spend time with him instead! Pray for me please. I want this cold to pass as soon as possible!