Some information to share

I recently read this on the blog of another family with a child born with CDH. I thought it might be helpful to all of you in understanding Jude's CDH.

1.      The survival rate for CDH babies runs at 50%.  Approximately 1600 births a year; 800 babies survive.
2.       CHD occurs in approximately 1:2500 births (I have read different stats from 1:2000 up to 1:5000, however 1:2500 seems to be the most common).
3.       There is no known cause for CDH.
4.       There is no way to determine if your CDH baby will or will not survive.  Some babies that have severe CDH survive, while other more mild cases do not.
5.       There are several types of CDH with the left sided being the most common (this is what Jude has).
6.       Many families have never heard of CDH until they are diagnosed with it.
7.       There is nothing that we could have done to prevent this from happening.

MUSC visit

Hi Friends,

I apologize that it has taken us awhile to post a blog update about our visit to MUSC. It has been quite a busy trip for us and we have “crashed” into our beds nearly every night because we have been so tired!

Here are some bullet points about our visit to Charleston:

- We arrived in Charleston really late on Tuesday night and got to the apartment. My dad’s cousin, David, and his wife, Mary Wood, let us stay in their beautiful apartment on State Street. It has truly been a haven of rest for us during our visit. We have rested well here and we are located close to so many great places to eat and enjoy. (Specifically: Dixie Supply for breakfast. BIG YUM) We are so thankful for the opportunity to stay here during our many visits with doctors and to be able to enjoy a little “babymoon” in Charleston together.

- Wednesday morning we started our appointments at 10:30am. First we had a lengthy ultrasound, so that our new Maternal Fetal Specialists could get their own pictures of Jude.  It was great to see Jude’s sweet little face again and we got some great pictures of him yawning. I hope to post some of these when we get home. He is weighing in around 4lbs and has quite a big head (like his big sister).  My amniotic fluid levels were still at 24cm too! (We’d rather them be lower, but they’ve remained below 25 over the last few ultrasounds, so that is encouraging.)

Then we met with one of the doctors to discuss our plans for me and for Jude’s delivery. Our doctor answered so many of our questions and took some time to explain what our delivery day might look like. Hearing about how things will be handled when he is delivered helped to set me at ease about his care and our opportunity to see him after he is delivered.  Jude’s delivery date will be December 6^th. Our doctors hope that I can carry him until I am 39 weeks pregnant. The plan is for me to come down to Charleston to stay when I am 37 weeks pregnant and stay until delivery. The reason for coming down a little early is so that I will be close to MUSC in case I go into labor on my own. 

- Next we headed over to the Children’s Hospital and met with one of the neonatologists. It was so nice to have her all to ourselves to discuss Jude’s CDH and his care at MUSC. We did not learn anything new about Jude’s CDH. Basically, we must wait until Jude is born to see how he handles taking in oxygen and the results of his CDH and thereafter decisions can be made about his needs medically and when he can have surgery to repair his CDH. It can be so difficult at times to accept that a diagnosis of CDH means a lot of uncertainty. It is very difficult for doctors to predict any outcomes because CDH patients can handle their medical problems so differently.

(Side note: We will be meeting with the pediatric surgeon in several weeks to discuss the repair of Jude’s CDH.)

- After meeting with the neonatologist, we were given a tour of the NICU where Jude will be staying after his birth. We met nurses, staff members and a social worker, too. It was helpful for me to actually see where Jude will be and what life in the NICU at MUSC might look like. They were all very kind and we could tell that they take their jobs very seriously. It was scary and comforting at the same time. While we were in the NICU, there was a baby boy there who also had CDH. 

- And finally we met with Melissa from Cross Bridge Ministries about where we will stay during Jude’s time at MUSC. I cannot remember if I mentioned this on the blog before, so please forgive me if I am repeating myself. A few weeks ago, one of the ultrasound tech’s at our local maternal fetal specialist's office gave us information about a ministry in Mt. Pleasant that provides free housing to families who have babies being cared for at MUSC’s NICU. I called and spoke with Melissa (who is a gem) and she shared with me the many ways that their ministry loves on and cares for families with sick babies at MUSC. We were immediately blown away by the support and prayers offered for us and our sweet baby Jude. We’ve continued to be overwhelmed by how much they want to care for us when we arrive in Charleston.

During our time with Melissa, we went to visit the house where we will likely stay during our time here.  The house was simply precious and even has a playroom and a fenced in yard (with a swing set) where Annabelle can play when she is with us. It truly felt like a comforting “home away from home”. 

So here are a few things we know from our trip:

1. We will be delivering on December 6^th at MUSC and Jude will be receiving his medical care from the MUSC NICU staff.

2. We will be moving temporarily to Mt. Pleasant when I am 37 weeks pregnant and staying with the sweet folks of Cross Bridge Ministries.

3. We know that Jude’s condition remains serious and that his chance of survival is still 50/50. But we are confident that the Lord has planned all of our steps until this point and we are certain that he has planned all of our steps in the coming days, months and years. We are trusting in Him at each moment.

4. We truly desire your prayers. 

What you can pray for:

- That Jude will not come early! Pray that he will stay put until his scheduled delivery date of December 6^th. 

- Pray specifically for December 6^th and for Jude’s lungs. Pray that they will be strong and able to sustain him. Pray that there are no complications with any other area of his body too.

- Pray for the neonatologist and nurses who will be working on Jude right after he is born. Help them to have confidence in their observations of Jude and that they will be attentive to all of his needs so that they can make good choices for his future care. 

- Pray for the pediatric surgeon who will be repairing Jude’s CDH. Pray that his hands will be steady, skillful and sure. 

- Pray for us as we prepare for the changes ahead. We don’t really know for sure what our lives will look like in late November or early December. We are so ready to finally meet Jude, but nervous about the journey that awaits us. 

What we are thankful for:

- A few days away together! After our many meetings on Wednesday, Brian and I have had some time together over the last few days in Charleston. It has been nice to sleep in, rest, eat, walk and enjoy each other. The Lord has richly blessed us in our marriage!

- Your phone calls, emails, and texts letting us know that you are praying for us during our visit to MUSC. It has meant so much to know that we are being covered in prayer. 

- The many different generous gifts that have been given to make our load a little lighter. 

Blessings,

Brian, Rose and Annabelle

Praises!

Hi friends,
Just wanted to get a short little blog post in while little miss Annabelle is napping.

This week was tough for me physically. I felt so much pressure and I was so tired. I also had some major contractions sporadically throughout the week. Needless to say, the pressure and the contractions really freaked me out. So much so that Brian stayed home from work to take care of me (and Annabelle) so that I could get some extra rest.

In the end, I went to see my OB a few days early because I was so worried that my amniotic fluid levels were again on the rise. I was so anxious and worried.

But guess what?? My amniotic fluid levels are actually lower!!!

I was so sure that they were higher, so I made them check twice. I was at 30cm and currently I am at 24cm.

Praise the God who hears our prayers.

Thank you to all of you who have prayed with us for my amniotic fluid levels! Please continue to pray!

We are truly thankful for a good report and we also realize that these levels may continue to go up and down. But over the last few days we have been celebrating the good news! Please rejoice with us and lift of prayers of thanksgiving too!

As for why I was feeling so badly, it is kind of a toss up between feeling pressure a little earlier because it is my second pregnancy and also because even though my amniotic levels are at 24cm, this is still not the normal measurement for a 29 week pregnancy. So, the pressure is normal. Just not comfortable. And the contractions are normal. Just as long as there aren't six or more in an hour.

Well, I'm off! Annabelle is singing sweetly in her room now. We will update you more as we can.

Blessings,
Rose

30cm

Dearest faithful friends,
I had my appointment on Friday afternoon and the ultrasound tech discovered that my amniotic fluid is now at 30cm. Brian and I were discouraged to hear this, but we are trusting that the Lord is handling each step of our pregnancy. I've been seeing the regular OB for the past couple of weeks and we are anxious to go to our appointment next Monday with our OB specialist (he has been out of town) to find out what his thoughts are on my higher amniotic fluid levels.
I've been feeling a bit more pressure/heaviness and I've had to take more time to rest and stay off my feet. Walking for any length of time, lifting and any up-down motion are all becoming difficult and uncomfortable. I joked with Brian that I feel like I am already eight and a half months pregnant (I'm currently seven months pregnant) and after my measurements at my last doctors appointment I'm not too far off. Because of the amniotic fluid levels (and our big boy!) I am measuring more like I am getting a little closer to eight months along! It's exciting and scary at the same time.

How you can pray for us:
1. Pray that my amniotic fluid levels would go down. We would be happy to get a good report on these levels at our next visit. And if for some reason the amniotic levels continue to rise, please pray for wisdom for the doctor as he decides what our next step will be. Also pray for us if higher levels mean more lifestyle changes. It has been hard for me to rest more (I'm generally a pretty active lady: a) with a wild 2 year old b) and I like a clean house) and to let the household chores go undone during this stage in my life.
2. Please pray for my mood and mind. With all of this resting (and rainy/gloomy weather) it has been hard to keep my spirits up lately. It's easy for me to feel down in the dumps and worried about Jude's future when I am not able to get out and about like I would in normal everyday life. Please pray that I would find great comfort in the Lord and that I would rest completely in Him. And please pray for Brian as he tries to balance working and caring for me and Annabelle. He is such an amazing man and is doing so much for all of us, but I know his load (in many ways) is very heavy as well.

What we are thankful for:
1. The great (sunny!) outdoors. Yesterday morning was tough for me and Brian had a spur of the moment idea. He said "Let's drive up into the mountains in Pickens/Oconee county and get away for the day!" I was so ready to get out of the house and enjoy a change in scenery. It was so nice to get out for a drive away from home! We had lunch and then went to Table Rock state park. I sat down most of the time, but enjoyed watching Annabelle and Brian run around in the great outdoors. We soaked up every minute. We left feeling refreshed and renewed. We are so thankful for such a great day together.

Results

Hi friends,
Thank you for your prayers for my gestational diabetes test this week. I passed! We are so thankful that I do not have gestational diabetes because that means one less concern on our minds during the next few weeks of our pregnancy. Thank you for continuing to lift us up in prayer. There are days when our hearts feel overwhelmed in knowing that so many people are praying for us.

Right now I am just past 28 weeks pregnant and on my way through our third trimester. I had a OB appointment last week and found out that my amniotic fluid level is now at 25cm. (During week 28 of pregnancy, amniotic fluid levels should be around 14 to 16cm.) As I understand it, 25cm is kind of the cut off for "normal-high" levels. So, now my amniotic fluid level is high. After a little research I have discovered that some CDH moms have had levels MUCH higher than 25. (One mom was at 37cm before delivery) So, right now we are keeping thankful hearts for the fact that we are on the lower end of high! I have another OB appointment on Friday to check on my amniotic fluid levels again.

How you can pray for us:
1. Pray that my amniotic fluid levels would begin to even out or even drop in the next few weeks. It would be wonderful to know that my amniotic fluid levels were lower because higher levels put me at risk for pre-term labor. And we'd really like for Jude to deliver as close to his due date as possible. I have had a total of three mild contractions (which we were told to expect) in the last 2 weeks. It scared me quite a bit, but they were all mild and had no lasting impact. Please also pray that I will not have any "productive" contractions until we are ready to deliver Jude!
2. We will be visiting MUSC in October to meet with several of the doctors about Jude's care. Please pray for clarity in our communications and for a sense of peace about any choices that are made in regards to Jude's care. We are anxious to have this meeting, but nervous about hearing about how things will go medically. Please pray that we will feel the Lord's presence with us throughout our day.

What we are thankful for:
1. Our Mothers! My mom and Brian's mother are alternating weeks and coming to our house for a few days to help out around the house and to help with Annabelle. It is such a joy to have them here (Annabelle TOTALLY agrees!) and it has kept me off my feet. I've been able to rest, reflect and take naps. What an amazing blessing.
2. Our upcoming babymoon! After our visit with the doctors at MUSC, Brian and I are doing to take a few days of R&R in Charleston. Some of our extended family members have a wonderful apartment in Charleston (in an awesome location!) that they are letting us stay in during our visit. What a tremendous blessing! We plan on sleeping in, eating well and savoring our time together.

Meeting with the Cardiologist

Hi friends,
Thank you for being so faithful in praying for Jude! We truly felt your prayers this morning at our appointment with the cardiologist! We were both anxious and worried but we were also hopeful and trusting the Lord with his plans for Jude.

Like Brian, I thought that I would also use bullets to tell you a little more about our appointment today:

• During the first part of our appointment we had an ultrasound to get Jude's measurements and to check my amniotic fluid levels. We learned that Jude is measuring a little bigger (good news!) and that he is already around two pounds and five ounces. I am around 26 weeks pregnant, but according to his growth they estimate that he has progressed to seem like we are more like 28 weeks along. We also learned that my amniotic fluid levels are a little higher. Last week I was at 20cm, but today I was at 22cm. 22cm is not great, but it could be much worse. I believe that they will start to get concerned if I exceed 25cm. 
• During the second part of the appointment we had another ultrasound with the cardiologist. Jude was quite wiggly and it took a long time to get pictures that the doctor was satisfied with. Eventually Jude turned and settled into a position that was desirable for getting a good look at his heart. And in the end the cardiologist told us that Jude's heart looked very healthy and that he did not see any sign of VSD!!! This was an answer to our prayers. We were truly hoping that the Lord would spare him from having a VSD so that his battle after his birth would only be the problems associated with his CDH. 

• And at the last and final part of our appointment we met with our perinatologist to discuss the results we received. Like us, he was very pleased to hear that Jude did not have a VSD. He also said that they would be working to set up appointments with the perinatologist, neonatologist and pediatric surgeon at MUSC to help us decide if MUSC is where we would like to deliver. We should have dates for our visit/meetings in the next few days. 

How you can pray for us:
1. Please pray that my amniotic fluid levels stay below 25cm. They have fluctuated a little in the last few weeks, so hopefully they will go down a little in the next week or so.
2. Next week I will have my test for gestational diabetes. Please pray that I pass this with no problem. I don't think that I will have it, but it is always a possibility. It would be great to not have to worry about gestational diabetes in addition to all we are worried about.
3. Please pray for our visit to MUSC! Pray that the Lord will help us find a clear and certain answer about our decision to deliver there.

What we are thankful for:
1. The many prayers that were lifted up for Jude and our hope that he would not have a VSD. Thank you for your commitment to pray for our little guy. We are SO thankful for the news we got today!
2. Our friends and family. I feel like I am repeating this "thankful for" every week but it is true! We are overwhelmed by the love and support that so many of you have offered over the last several weeks. The emails, calls, visits, meals, gifts, hugs, texts, etc. have meant SO MUCH to us. Each day we see ways that the Lord is loving on us through all of you!

Brian, Rose and Annabelle :)
P.S. A few of our friends and family are hosting an online shower for Jude in November. To learn more about how this will happen, click HERE. We are overwhelmed and thankful for such a blessing!

Prayers for Thursday

Hi everyone,

Just wanted to post a quick update to let all of you know that we will be meeting with a cardiologist on Thursday to get a better feel for how Jude's heart is doing. We are hoping that we can get some answers about the possibility of him having a VSD or not. We will post an update for all of you as soon as we can.

What we are thankful for:
1. All of you. For your prayers and for an amazing God who hears each of our prayers.

2. For the many ways that so many of you have offered to help us. Words cannot express how touched we are by the support and love you given us.

How you can pray for us:
1. Pray that Jude does not have a VSD. We would love for him to only have to fight the battles that come with CDH instead of CDH and VSD.


2. We will be visiting Charleston in the coming weeks to decide if MUSC is the best fit for Jude's delivery. Pray for wisdom and clarity for us when we make this choice.

Brian, Rose and Annabelle