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

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 again...it 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 (http://www.4moms.com/mamaroo)in 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

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!

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

Hi,
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!

Struggling...

Friends,
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. 
Refrain:
 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. 
 (Refrain) 

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

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

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

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!