Monday, October 31, 2011

Thankful!

Hi friends!
Just wanted to do a quick post to let all of our faithful friends in prayer know that Saucy has a foster home now!! We are so thankful and relieved!
A friend of mine from my book club knows a lady who is a dog trainer and she knew a young woman who is willing to foster Saucy for us while we are away caring for Jude. We are quite certain that Saucy will LOVE his foster home and that he will get plenty of attention and love.
Likewise, Winnie is being fostered by an awesome family with three little boys. I'm quite sure that she will be smitten with all of them too. She is going to have a blast!

I had another doctors appointment today and Jude continues to grow! All looks well with him except for his CDH. My amniotic fluid is now at 28, so please continue to pray that they will decrease or remain the same. I'm feeling ok....I have on and off days. Mostly I feel like I can't breathe because of all the extra fluid and a big baby!

What we are thankful for:
Sweet friends who have done little things to brighten our day. Several of you have surprised us with little notes or gifts that have really lifted our spirits.

The love of our Lord and how he is caring for us each day. There are so many stories that I wish I could share about how God is ministering to us daily. How blessed we are to know Him and to know that He will never leave us.

What you can pray for:
We are now exactly 3 weeks away from our temporary move to Charleston. Things are starting to come together for our move and life is moving forward each day. We are thrilled about meeting Jude and we cannot wait to see his sweet little face! But we are so anxious about his first day. Will you pray specifically for his first day? I also wanted to share that a friend of mine from my MOPS group is setting up a prayer vigil on the morning of Jude's birth so that individuals can go to a chapel and pray for specific aspects of Jude's life on the morning he is born. I hope to post more details as I know more.

Pray for our last three weeks as a family of three at home. We want to cherish each and every moment. Pray for plenty of rest and plenty of joy! :)

Wednesday, October 26, 2011

33 Weeks

As you may have guessed from the title of my blog post, I am now 33 weeks pregnant! Today I had a doctors appointment and had an opportunity to get another peak at Jude via ultrasound. He is growing well and has cute chubby cheeks. During this ultrasound he mostly kept his hands and feet away from him face which allowed for the tech to take some great photos of his precious face. I am always thankful for the opportunity to see him.

Jude is growing well and seems very healthy except for his CDH. He continues to be very active and is weighing in at around 5lbs and 4 oz!

My amniotic fluid level was at 26cm today: up from last time (24cm) but not nearly as high as it has been (30cm). Please continue to pray that it will remain at this level or go down. At this point, the biggest concern for Jude and for me is pre-term labor. Currently, it doesn't appear that we are at risk for this but it could change. Because of the high amniotic fluid levels preterm labor is a possibility but my body isn't showing any other signs of this occurring any time soon. I've not felt any contractions or even Braxton Hicks (practice contractions) in weeks. We are SO thankful for this! Thank you for lifting this concern up in prayer and please continue to.

My doctor also recommended resting even more than I have been and putting my feet up to try to keep Jude with me as long as possible. He'd really like for us to make it to 39 weeks to our scheduled c-section and he's really like for me to be in Charleston (and near MUSC) if we went into labor early. So, I'm trying my hardest to rest and take it easy to keep this sweet boy with me as long as possible.

We are also visiting the doctors twice a week now so life is getting a little crazy with our schedules and planning our upcoming move to Charleston. Please pray for us as we balance this change!

What we are thankful for:
  • Our chubby little boy :)
  • The many meals that so many of you have provided for our family. It means so much to me to be able to stay off my feet and enjoy my family at dinner time. I know Brian appreciates it too because he doesn't love to cook.
  • The many ways that so many of you have found ways to meet our needs and requests. Just to name a few: a place to stay during our Charleston visit, a GPS, a lap top with a camera, a baby shower, contact with your family members in the Charleston area who will be checking in with us while we are there, a house to stay in while we are caring for Jude, financial gifts to help us shoulder the medical bills, baby items, fostering our dog Winnie while we are away, and so many more. We are blow away by the prayers, love and support that you have all given to our family. Thank you. Truly.
What you can pray for:
  • I know that this is a reoccurring request, but we have become desperate for a home for our dog Saucy. We are just over 3 weeks away from our move to Charleston and we have no idea where Saucy will be. We know we can't leave him at our house when we leave and so we are worried that we may have to take him to the animal shelter. It breaks our hearts. So, please join us in praying for a foster family for Saucy. As I may have mentioned before, he would be the perfect companion for a single person or a couple with no children. Saucy is not really kid-friendly...he is not bad with kids, he just doesn't bother with them at all. He'd rather be left alone or loved on by an adult. He loves playing catch and is quite loyal. And he is happy to spend time outside or inside. If you or someone you know would be willing to foster Saucy while we are away please contact us at just.enough.for.the.journey@gmail.com We'd be happy to answer any questions about Saucy too. We'd just love for him to find a home while we are away.
  • Please pray for Annabelle. We want Annabelle to feel loved on and stable during our time caring for Jude in Charleston. The plan is for her to spend some of her time with me and Brian in Charleston, with my mom in both Charleston and Florence and with my sister in Florence. She will be staying with all of us at different times based on how Jude is doing and what life looks like at that point. Will you all pray that she feels safe and comfortable despite her constantly changing environment? I am certain that she will have a blast with all of her cousins, her aunt and her Nana...but my heart also breaks because she will not always have her mommy and daddy. If you would, also pray for wisdom for Brian and I as we decide when and where she should be at different times during our tough journey.

Saturday, October 15, 2011

Just a hello

Hi friends,
Just thought I'd do a quick blog post to say hello! I've had my feet up for an hour or so while Annabelle has been napping and it'd been great to just rest. I'm so thankful for all the help I've had from Brian, my mom and my mother-in-law these days. There is very little laundry and dishes to do and plenty of time to rest and play with our sweet kido. What a blessing to be loved on in this way.

Additionally, our sweet friend Kim (who I think of as my third mom!) has set up for us to have meals brought to our house on Mondays and Fridays so that life is a little less stressful. It is so nice to sit down and enjoy a tasty meal together and truly enjoy one another during these last few weeks before me head to Charleston. I am so thankful that so many of our friends and family are doing as much as they can to care for us so that I am well rested and so that Jude can stay in my tummy as long as possible.

I am still feeling overly pregnant, but I'm not feeling nearly as much pressure as I was feeling a few weeks ago. I do not have any doctors appointments next week, but I have two the following week. After that, the frequency of appointments should increase. I cannot believe that I will be 32 weeks pregnant this coming Tuesday!

I must admit that I am getting more and more excited about finally meeting Jude. But I also must admit that I am equally getting more and more nervous about the changes that are ahead of all of us. I go to the Lord each day about my worries and my joys and He has sustained me. It is truly amazing to see how He is caring for us.

We've been working a little bit on Jude's nursery over the last few weeks and things are really starting to come together. His room was already blue and all of the furniture is set up too. We've received SO MANY cute little outfits for Jude and his closet is totally full. Thank you to all of our friends who have shared their hand-me-downs. We've also been given many items that we needed for our little guy. I really hope he will be able to come home with us one day to enjoy all the love from all of you.

Additionally, I am looking forward to our upcoming shower on November 19th! It will be wonderful to spend time with our sweet family and friends on that day. We are also so thankful to all of you who are planning on participating through the ONLINE SHOWER portion too. (This portion requires no invitation. Anyone can be a part of it) We've been so overwhelmed by the many ways that many of you have offered to support and care for Jude and for our family.

I also thought that I would take a minute to offer to answer any questions that some of you may have about Jude, his condition, his care, etc. I know that in the coming months it will be very difficult for us to answer any of your questions, so I thought I would offer to try to answer some. I'm probably not the best about explaining everything about CDH, but I will try. If you have a question, please feel free to post a comment or email us at just.enough.for.the.journey@gmail.com I hope to do a post in a week or so and attempt to answer some of your questions.

What we are thankful for:
Nice fall family days together. Some friends of ours brought us dinner last night and we took the meal outside and had a nice little picnic for the three of us. I think Brian and I are savoring each moment that we have all together.

What you can pray for:
A temporary or permanent home for our dog, Saucy. We have still not been able to find someone to care for him while we are away. It truly breaks my heart to think that we may have to take him to the animal shelter before we leave for Charleston. (At least we can be thankful that it is a no-kill shelter) Please pray for a home for Saucy.

Please pray that Jude will continue to remain in my tummy until he is delivered on December 6th. I have not had any signs of pre-term labor thus far and we'd really like for it to stay that way. Thank you again for your prayers for my amniotic fluid levels and my contractions. The fluid levels seem to be holding at 24cm and I've not had a contraction in more than a week!

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.

Friday, October 7, 2011

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 6th. 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 6th 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 6th

- Pray specifically for December 6th 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