Directions, Please?

OK, so I'm going to try and recap some highlights from appointments that Rose has had over the last few days. But let me forewarn you: What follows might be a little scattershot.

So, Rose had an appointment at her regular OB/GYN practice on Tuesday of this week, but nothing particularly noteworthy came out of that visit; everything the OB checked was OK.

Yesterday (i.e. Wednesday), Rose had an appointment with the perinatologist. A few things came out of this visit:

• Rose's amniotic fluid levels are down a little bit. That's good news! While we don't want to get overly excited about this change, Rose's levels went from 20 cm to 18 cm, which suggests that Jude might be swallowing some fluid after all. We're praying that Rose's levels will continue to remain as close to normal as possible.
• An ultrasound of Rose's cervix revealed no signs of preterm labor. CDH babies can be born early sometimes, and, as mentioned before, high amniotic fluid levels can trigger preterm labor, which is something we don't want.
• Although Jude was poorly positioned to get good pictures during his first 3 ultrasounds, the ultrasound tech was finally able to get some good pictures of his heart yesterday. And, interestingly enough, neither the ultrasound tech or the doctor could see evidence of a ventricular septal defect. We're pleased to hear this, but we're also taking it with a grain of salt. Thus far, the ultrasounds have oscillated between showing that Jude has a VSD on the one hand, and suggesting that he doesn't have one on the other. We're pleased to hear this latest bit of news, but we're hoping that subsequent ultrasounds confirm it rather than overturn it.
• Bits of Jude's intestines were seen in his chest cavity on the ultrasound, but fortunately it looks like his spleen and liver are still in the abdominal cavity. Our hope is that both the liver and spleen will continue to remain in the belly as he progresses in his development.

Today was interesting.

After a scramble through lunchtime traffic in Greenville, we finally connected with the neonatologist for our consultation. We were 20 minutes late for the appointment after Rose and I got separated (long story) and couldn't figure out where in the world we were supposed to meet Dr. Walker.

To the lady in the blazer who helped us find our way: I don't know who you are or what your job is at the hospital, but thank you. Thank you for leading us through that labyrinth of hallways to our destination. Thank you for taking us through the doors that required access cards we didn't have. Thank you for directing us to steer clear of that little bit of poo that was on the floor in the middle of that waiting area that we passed through. (Yes, there was poo on the floor in one of the waiting areas on the 6th floor. Don't have a clue how it got there. Weird. Yucky.) Thank you, blazer lady. God obviously sent you to help us find our way in a time of need -- and that's no joke.

Finally, after Rose and I separated, reconnected, and navigated the 5th and 6th floors of the hospital with a little bit of help from a friend, we reached Dr. Walker's office. A very nice man, he invited us in and we had a long conversation about Jude, CDH, ECMO, lung hypoplasia, gentle ventilation, and a million other things that I'm still trying to remember and process. I'm not going to try to recount that whole discussion -- it'd be too much info for one post. So, here are a few bullet points to sum up the highlights:

• It looks like we will not be delivering at GHS. Dr. Walker marshaled some statistics in our discussion that made it pretty clear that another hospital, one that has ECMO, would be best for delivery and neonatal care. Although it hasn't been finalized, we'll probably be going to MUSC in Charleston.
• Jude's hernia is on the left side of his diaphragm. Its early detection may suggest that it's a little bigger or more severe than it would be if it presented later in his development, but it's better that it's on the left side than on the right. Right-side diaphragmatic hernias are less common and can pose more problems, as we understand it.
• Apparently, babies that are diagnosed with CDH prior to 24 weeks are statistically much more likely to need ECMO therapy to survive than babies that are diagnosed after 24 weeks or immediately following birth. Jude was diagnosed at 20 weeks.
• Although Rose might have understood this a little earlier than I did, Dr. Walker clarified something about ECMO for us: It's not something that we necessarily want to use. To be sure, it's awesome that the technology exists. ECMO is like a heart-lung machine that works over an extended period of time to oxygenate a baby's blood when his lungs can't do that sufficiently on their own. The technology kind of blows my mind, to be honest, and it saves babies' lives when they might have died before its advent. But, we're hoping that Jude won't need it, not least because the prognosis becomes a little more dim if ECMO enters the picture. Per some stats Dr. Walker culled from the Congenital Diagphragmatic Hernia Study Group, it looks like roughly 94% of CDH babies who have surgery and don't need ECMO survive; on the other hand, babies who have ECMO and surgical repair show a 50-77% survival rate, depending on the sequencing of surgery and ECMO therapy.

After we talked, Dr. Walker took us on a quick tour of the GHS NICU, which was eye-opening. I'd seen premature babies on TV, but I'd never seen them personally. We saw one preemie who was born at 24 weeks, which was wild. That little guy could have fit in my hand.

Amazingly, there was a CDH baby in the NICU when we came through. A baby girl, encased in a little pod, with a little feeding tube and a ventilator attached to her. She was really precious, but seeing her completely disoriented me. The doctor was talking to us while we were lingering near her, but something was drowning his voice out in my mind. Rose thought I looked a little freaked out , but all I could think about was my hope that the Lord would spare her; that is, that he would sustain her and allow her to live. I thought about her family and what they might be feeling. I don't know what it will be like to see my own child in such a state. It may not be long before I find out.

So, that's the news for now.

If you would, please remember Jude in your prayers. Pray for healthy development in his body, particularly his lungs. Pray for his physicians -- that they would be given wisdom and discernment for the difficult decision-making that may arise when caring for Jude.

Rose and I continue to be thankful for the support and comfort we're receiving from family and friends. Also, to those of you who are reading this and praying to God for His mercy and provision in this situation: Thank you.


"Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God."
(2 Corinthians 1:3-4)

Wednesday

Hi friends,

Just wanted to give you a quick post letting you know that we will post an update tomorrow evening about the three doctors visits that we had this week. Tomorrow is our meeting with the neonatologist here in Greenville. We are hoping that he will give us information that will be helpful in making our choice for Jude's location for care. We have also scheduled to meet with the pediactric cardiologist in the next few weeks. We can tell you more about this tomorrow as well.

Please keep us in your prayers tomorrow. Thank you so much.

Brian, Rose and Annabelle

A blessing!

Many of you have been asking for ways that you can help us. And we have been so blessed by your desire to love and support us as we love and support Jude!

A new blog has been set up by our loved ones to share ways that you can help. For more information, follow the link below:

Manna for the Moment - for the Morrisons

Quick update and some pictures

Hi everyone,
Just wanted to give all of you a quick update. We will be meeting with the neonatologist on Thursday afternoon. This meeting will hopefully give us a better picture of the severity of Jude's CDH and we are hoping that it will also help us make some definite choices about where we will deliver. Please keep us in your prayers on Thursday. We will post an update as soon as we can. Thank you to all of you who have been following our blog faithfully and lifting us up in prayer!

What we are thankful for:
Annabelle. She has such a cheerful and sweet heart. Her silly behavior and hugs have truly warmed our hearts this week. :)

What you can pray for:
The consultation with the neonatologist on Thursday.

We are planning to sit down together and call our insurance company on Tuesday to get a better idea of what our coverage will look like. We'd appreciate your prayers.

Now, for a few pictures!
As Brian shared in our last post, Jude is quite the wiggle worm. So some of the 3D photos that we got were a little distorted but it is still awesome to see his sweet little hands, feet and face. I've also posted the picture of him covering his face when it seemed like he was trying to hide from us. He is quite the active little guy and is much more active than his big sister was at this age.

Learning a Bit More...

Today, Rose had another appointment with the high-risk obstetrician. After a 30-minute wait in the lobby, Rose was taken back for yet another ultrasound -- something we'll need to get used to, apparently, as they'll be necessary to monitor Jude's development and Rose's amniotic fluid levels.


There were no new major developments or discoveries today, but here's what we learned from the ultrasound:

• Jude is a wiggly worm. He was incessantly flapping his arms and legs and wriggling about. (As I understand it, at one point in a baby's earliest stages of development, he has the same basic appearance as a chicken embryo/fetus. Judging from all his flapping, apparently no one told Jude that he's not a chicken.) His heightened level of activity would be amusing if it didn't make the ultrasound tech's job so difficult. Imaging his various parts, particularly his heart and a few other key areas, was tricky because he was moving so much. Despite his crazy chicken dance, our ultrasound tech was very patient and took the time necessary to check Jude out pretty thoroughly.
• It does look like Jude has a ventricular septal defect (VSD). Luckily, this is a pretty common birth defect, and VSDs often close up on their own without any real problems. We'll probably learn more about this as we go along.
• Jude's not only an active little boy, but he's also a pretty healthy size at this juncture. Drawing tentative conclusions from his measurements, it looks like he's in roughly the 67th percentile in terms of size, and is believed to currently weigh in at 1 pound, 5 ounces. This seems pretty encouraging -- that is, it's good that he seems to be showing healthy development. To be sure, Jude's safe and is "breathing" through Rose right now while he's in utero, but we nevertheless want him to be big and healthy (in as many ways as possible), and we want Rose to get to term, if possible, to afford him the most time in the womb for lung development.
• We got our first "4D" imaging of Jude today during the ultrasound, which was something new for us, as we didn't opt for that kind of imaging during Rose's pregnancy with Annabelle. It was pretty cool to see some shots of Jude in three dimensions, although the little stinker kept blocking shots of his face with both his arms and his legs. At one point, it almost seemed like he was playing peekaboo: We would see a glimpse of his face, then he would cover it with his arms and hands. It brought a smile to our faces. :)
• One bit of news that wasn't so great is that Rose's amniotic fluid levels may be on the rise: She's measuring 20 centimeters of fluid, and 24 centimeters is considered high; therefore, she's at a high-normal level right now. (Amniotic fluid levels can rise because, with the baby's esophagus crowded by the other organs in the chest, he isn't swallowing fluid and effectively managing its levels the way that babies normally do.) The risk associated with higher levels of fluid is that it can trigger pre-term labor, which is something we certainly don't want. Jude is already going to have lung problems when he's born, so we certainly don't them to be both poorly developed and immature because of a premature birth. If it's necessary, further amniocentesis can be done to drain off some amniotic fluid. The last thing I'm sure Rose wants is to have another long needle inserted into her stomach, so we're hoping amniocentesis won't be necessary.

After Rose's ultrasound was finished, we sat down with the perinatologist to discuss what lies ahead and to answer some basic questions we had. Here are a few things that came out of that conversation:

• We're going to have a consultation with a neonatologist in the next few weeks. That discussion should hopefully give us some insight into where Rose will deliver and where Jude will spend his first weeks/months of life. Because the hospitals in Greenville don't offer extracorporeal membrane oxygenation (ECMO), a sophisticated form of life support that's similar to a heart-lung machine, Rose and I are thinking that MUSC in Charleston will be the place to go. While we know that there are gifted physicians and excellent facilities in Greenville, we want to ensure that we are in a place where Jude will have the specialists and care readily available to deal with the various contingencies that might arise. If, in the end, delivery in Greenville is an option, that would awesome; however, we don't know how likely that will be. One of our prayers is that God will work miraculous lung development in Jude in spite of his condition such that more involved forms of support may not be necessary. But, we'll have to wait and see how things work out.
• In the coming weeks, we'll also meet with a pediatric heart specialist, which will hopefully give us more insight into Jude's condition and perhaps answer lingering questions that we may have at that point.
• Because Rose's fluid amniotic fluid levels may be on the rise, she'll need to go back to the perinatologist every 7-10 days for monitoring. These visits will be in addition to any normal visits to her "regular" obstetrician who she was seeing exclusively before we learned about Jude's CDH. And, as indicated above, appointments with other specialists are coming down the pike as well. So begins the pattern of regular treks to the doctor's office...

One thing that has changed for Rose and me is that going to the doctor has gone from a relative non-experience in which there was typically either good news or no news to a bracing experience in which we're both rather nervous and additional details about what is or what is to come just seem to stir the pot of our anxieties and fears. Although we find ourselves doing a lot of hand wringing, we are certain that God is present and working in ways that as yet we may not fully appreciate or understand. And, to be sure, despite our myopic perspective on what's going on in our family's life right now, we have already seen the ways in which He is working, particularly through His church as its members reach out to us and love us in so many ways.


Among the many things we're thankful for today, here are but a few:

• Unexpected blessings. Our perinatologist told us today that, if we ultimately go to MUSC for delivery and care, his office would arrange for free housing for us in Charleston. And we've had other such offers, too. Although we know that things might not always be so easy or simple, we're thankful today for how the Lord has been and is providing for present and future needs through unexpected blessings.
• Prayers. So many people are going to bat for us on their knees, and we are extremely grateful that others are crying out to the Lord over our family's situation, particularly for Rose and Jude's health.
• His church. In recent weeks, our pastor has preached on several Psalms that have spoken directly to the questions of who God is and how he makes himself known. Although many things have been clarified through this recent preaching His Word, one thing in particular has hit me (Brian) with particular force: The church is God's dwelling place, and he makes himself known through and among His people. Although the hardest days of coping with Jude's condition and what that will mean still lie ahead of us, our brothers and sisters in Christ have already begun reaching out to us. Through their words of encouragement, prayers, emails, hugs, meals, babysitting, and other forms of love and support, we feel the love of God as He's ministering to us through His people.

Although there are many verses through which God is presently revealing himself to us, this is one that is with me right now:


Behold, the eye of the LORD is on those who fear him,
on those who hope in his steadfast love,
that he may deliver their soul from death
and keep them alive in famine.
Our soul waits for the LORD;
he is our help and our shield.
For our heart is glad in him,
because we trust in his holy name.
Let your steadfast love, O LORD, be upon us,
even as we hope in you.
(Psalm 33:18-22)

An update of sorts, August 8th, 2011

Hi everyone,
We don't really have any new news about Jude. But I wanted to stay connected with all of you about how we are doing and to thank you again for your prayers, support and encouragement.

We are still anxiously awaiting our next appointment on August 15th. We will be sure to post an update soon after our visit. Over the last few days we are continuing to process Jude's condition. Each day has glimpses of encouragement and discouragement.

Brian and I were talking over lunch today and I shared with him that I felt like I was playing the ending of two different movies in my head throughout the day. In one movie we are left holding our son who has passed away and we are left desperate to find answers from the Lord about why he chose this path for us. And in the other movie ending we are rejoicing and bringing our son home to his room where we are reunited as a family and we begin our path as a family of four. The ups and downs of this diagnosis are so difficult.

What we are thankful for:
1. Each other. Brian and I are so thankful that the Lord has provided us with an incredible friendship within our marriage. There is truly nothing as sweet as bearing your soul and deepest feelings to your best friend and spouse. I am truly, truly thankful for our marriage. Throughout the years and now.
2. Out church family and their uplifting friendships. We went to church this Sunday and it felt so good to be in the presence of the Lord and surrounded by such dear friends.


What you can pray for:
1. Please continue to pray for our choice of hospital. We are weighing the options and benefits of many hospitals. Please pray that the Lord will give us discernment to choose the right one for Jude and our family.
2. Pray for us as we find our new "normal" after receiving Jude's diagnosis. Some days it is very tough to realize that we must wait until December to know what is going to happen. It is difficult to know that there is nothing that we can "do" to make his CDH better before his December due date. I am learning more now than ever that I must FULLY rely and trust in the Lords plan for Jude and our family.


Blessings and love to each one of you!
Brian, Rose and Annabelle
written by Rose

Congenital Diaphragmatic Hernia (CDH) | Your-Carolina | Local Entertainment for Greenville, Spartanburg, Anderson S.C. and Asheville N.C.

Please click on the link below to see a video about a local little boy who had CDH when he was born. I could not believe that there was a local story about CDH. If you know this family, will you tell us how to get in touch with them?
I thought it might he helpful to our readers to learn more about CDH.

Congenital Diaphragmatic Hernia (CDH) Your-Carolina Local Entertainment for Greenville, Spartanburg, Anderson S.C. and Asheville N.C.

Much love,
Brian, Rose and Annabelle
written by Rose

One week

Hi Friends,

It has been one week since we met with the specialist that confirmed Jude's CDH diagnosis. In some ways it seems like forever ago and in other ways it feels like we just found out.

It has been an exhausting and uplifting journey for us. Exhausting because we continue to feel overwhelmed by the diagnosis and what it might mean for Jude. Uplifting because we feel confident that the Lord is carrying Jude and our family and we are certain that he has already confidently and lovingly planned all of our steps for the coming months (and years!).

We have had our share of "up" and "down" days. Some days we feel consumed by our grief and our fears for Jude and his health and on other days we feel certain of God's goodness and ability to carry us through this. Please continue to pray for us each day. We know that the Lord is hearing your prayers and that He is sustaining us always.

A few of you have asked us some questions about CDH and I found a web page that can answer a few of your questions. This website is provided by CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support and you can find it HERE.  

I wanted to start a new regular posting on our blog which features "what we are thankful for" and "what you can pray for" Jude and our family. I felt that this might be a better way to organize our thoughts and share with all of you. I also know that many of you have asked for ways that you can help and this will allow for me to share ideas for how we could use your support and prayers. We are so thankful for each and every one of you.

What we are thankful for:
1. In the last week, we learned that sometimes CDH can be missed on an ultrasound and that ultrasound techs may accidentally miss the signs. Sadly, babies with undetected CDH can be born and die shortly after birth without specialized medical intervention.
Additionally, our insurance only pays for two ultrasounds: one at week 12 and one at week 20. Additional ultrasounds can be scheduled and covered by insurance if medically needed.
We are thankful for the ultrasound tech that performed our ultrasound that day. She was attentive and worked very hard to thoroughly examine Jude despite the face that he was extremely wiggly and difficult to "catch". We are thankful that she did not give up and that she was especially focused on our baby boy. It was the longest ultrasound that I've ever had but it was the most important one!

2. My mom. She has been here all week helping us out with Annabelle and household duties. She has allowed me to rest and has loved on us in so many ways. I am so thankful that my mom has the ability to drop everything and come stay with us.

3. All of you. Your calls, emails, visits, texts and cards. The meals you've made, the support you've offered and the hugs you've given. But most of all we are thankful for your ceaseless prayers.

What you can pray for:
1. Right now we are beginning our research into the hospitals that have an Extracorporeal Membrane Oxygenation (from here on out we will refer to this as ECMO) treatments available and a team that can provide the best support for Jude with this method. (You can read more about ECMO HERE. None of the hospitals with ECMO are nearby. Most are 3 or more hours away. Will you pray for us as we research and decide on the best hospital for our delivery, surgery and recovery?

2. This might seem like super silly request but it is a very real one. Once I deliver Jude in December, it is our hope that Brian can remain with me as long as possible. Therefore our family will be temporarily relocated to the area of the hospital we choose. We already have someone who can keep an eye on our house and make sure that everything is alright but we are in need of care for our two doggies while we are away. We are open to a temporary or permanent home for them. If you could already start praying for this it would mean a lot to us. It has great potential for being a headache for us during the months that we are trying to focus on Jude and our family and we are praying that the Lord will remove this barrier.

Love you all!
Brian, Rose and Annabelle 
Written by Rose

Quick update!

A few minutes ago we received the results from the amniocentesis and Jude does not have Trisomy 13 or 18!

We are filled with joy and thanksgiving! God is SO good!

Thank you for your prayers and encouragement. We will keep you posted on any new developments in the coming days and weeks as we learn more and more about what CDH means for Jude.

We hope to write a longer post soon but please join us now in celebrating this wonderful news!

Love to all of you!
Brian, Rose and Annabelle