March 18, 2011

Frequently Asked Questions

With the big day just around the corner, and our anticipation rising, we are so grateful for the many of you who are following our blog, sharing our story, and praying for us.  We know that many of you have lots of questions; some of which you may even be afraid to ask.  So, I've compiled a FAQ that might help you out.  Please feel free to share our blog, and our story with any other friends, church members, colleagues.  We're thankful for all the prayers we can get. 


Q. I’ve just stumbled on this blog recently I’m not really sure what’s going on.  What’s Clara have exactly?
A.  Clara was diagnosed at about 18 week gestation with Congenital Diaphragmatic Hernia (CDH).  If you want to read our story (without reading this entire blog) this post is a good summary.  You can also learn more about CDH by visiting this website.

Q. Are you having a C-Section?
A. Right now, we have a scheduled induction, so we hope it will be a vaginal delivery.  We do know that she’s big (and seems to have a particularly large head, thanks to her father), so it’s always a possibility we’ll have to do a C-section.  If that’s the case, I’m okay with it.  A vaginal delivery is supposed to be better for her and for me, but we’ll do whatever she needs when the time comes.  (Yes, I’m signing up for the epidural.  No pride here.)

Q.  Will you get to see Clara when she’s born?
A. Yes!  Probably just briefly for a moment before the NICU team begins working on her in Labor and Delivery.  Then, they’ll take her downstairs to the NICU to do more tests, get a line in, and whatever else might need to be done.  If she’s stable and doing well, we’ll be able to stop by the NICU again and see her before I’m moved to the recovery room.  We won’t be able to hold her, but we should at least be able to touch her little fingers and toes and tell her over and over and over again how much we love her and how glad we are to meet her. 

Q.  When will Clara be transferred to Baptist Hospital (Brenner Children’s Hospital)?
A.  Probably within the first couple of hours of her life.   If there are problems or issues, they’ll transfer her quickly.  If she’s relatively stable, they’ll give her a couple of hours to catch her breath (so to speak) and then transfer her to Baptist to be evaluated by the surgical team.  There’s a special little transport vehicle just for NICU babies.  It’s basically a NICU on wheels and she’ll be in excellent care!  It’s only a 7 minute drive between the two hospitals.

Q.  Wait!  You’ll be at Forsyth Hospital and Clara will be at Baptist Hospital?
A.  Yes.  But not for too long.  It sounds crazy, but it really is the best situation.  Forsyth is best equipped for labor, delivery and post-partum care.  Baptist is best equipped for dealing with very sick babies.  We want me to be with the best doctors for me and Clara to be with the best doctors for Clara.  If labor is relatively easy (Ha!  Is it ever?!) and I’m doing okay, my doctor will discharge me early, after about 24 hours.  If I have a C-section or other complications and need to stay longer, she will give me some passes to leave Forsyth and go over to Baptist for some stretches of time and then return.  I know it might sound crazy, but we’ve thought through it and talked about it and it really will work just fine.  Everyone is going to have the best medical care possible! 

Q.  When will Clara have surgery?
A. Ahhh… that’s the million dollar question.  We’d really love to know the answer, but we don’t!  It all depends on what happens once she’s here and tries to breathe air for the first time.  It could be as early as a couple of days after she’s born or it could be several weeks.  We’re praying for the former and a speedy recovery to follow, but the surgeons will know what’s best for her and we will trust them.  Stay tuned to the blog for updates about a surgery date as we find out ourselves.

Q. Are you going to nurse?
A.  I won’t be able to nurse at first because Clara will likely be intubated/ventilated and have a feeding tube.  I am hoping to pump and give her my breast milk that way.  Down the road, we may even be able to transition from bottle back to breast.  But that’s a long journey and babies with CDH often have feeding issues.  We’ll cross the bridge when we get to it, but we’d love to be able to nurse and will at least hope to give her pumped breast milk as much and as long as possible.  It’s another great thing for you to pray for.  

Q.  Can we visit?
A.  Maybe.  Nobody will be able to visit Clara while she’s at Forsyth Hospital (not even grandparents!).  Their NICU is still on Flu Alert and only the parents are allowed in.  Once she’s transferred to Baptist, we can have up to 2 visitors in the NICU (including one of us), so there is a possibility.  But we will also be happy to have visitors come spend time with us in the waiting room.  You should definitely call or check with someone in the family before showing up though. 

Q.  How long will Clara be in the hospital?
A.  That’s another unknown.  The shortest stays for CDH babies are usually in the 3-4 week range.  That’s certainly what we’re hoping and praying for!  Some babies are there as long as 7-8 months…. That’s not usually a great sign.  My thirtieth birthday is April 30… I’ve been saying the best birthday present in the world would be to have my baby home.  We’ll just have to see.

Q.  What will you need?
A.  Your prayers, your love, your patience.  Beyond that, we don’t really know exactly what we’ll need right now either.  Maybe some meals, but we’re not sure when.  Probably some people to drag us away from the NICU from time to time and help us re-focus on life and God and friends outside of the hospital.  We’re not sure what else we’ll need, so again – please be patient with us and let us figure out what this is going to look like before you all start showing up with the chicken pies.  We’ll take it a few steps at a time.

Q. Are you scared?
A.  Yes.  Find me a first time mother who’s not a little anxious about squeezing out a watermelon.  I’m a little nervous about labor and delivery, but encouraged by some early progress and very very very grateful to have the best doctor in the world.  I’m really not terrified or panicked.  I’ve always said I had birthing hips.  I can do this!  I’m scared for Clara, too.  It will be hard to watch her struggle, sad to see her hooked up to wires and machines, difficult to not be able to hold her or fix her.  So, of course I’m scared.  But I also have a great peace about this (most of the time!).  There are so many blessings surrounding us… we really can’t even believe how fortunate we are in so many significant and meaningful ways.  I’m excited about becoming a mother!  I’m eager and ready to meet my child!  I’m a big hormonal emotional fruit basket.  So scared is part of it, but there’s a lot of other great stuff going on, too. 

Q.  Is it hard for you to talk about this?  Should we not ask questions?
A.  Really?  Me?  Hard to talk?  About anything?  Nah….  Now, I might randomly break down on you and start crying.  But for the most part, I’m more than happy to tell you what I’m thinking and feeling and answer any questions you have.  Hopefully if nothing else, this blog has shown you I’m a pretty open book.  So don’t feel like you have to tiptoe around us.  We’re okay.  Really. 

Q. How can we find out what’s going on?
A.  We’re so thankful for so many people who are loving us and concerned about us!  We probably can’t answer every single phone call/email/text/Facebook message.  But know that each and every one means a lot to us.  The best way for you to find out what’s happening is to check the blog.  Both hospitals have WiFi and it is our intention to update, when we can.  We’ll post photos and let you know how Clara is doing whenever the chaos and craziness calms down enough for us to do so.  We’ve got a call list of folks we’re going to try to reach by phone after she’s born before we broadcast to the whole world wide web.  I’m still new at this whole public persona thing.  But the blog is your best bet for staying in touch.  All those other methods work too, but be patient with potentially slow/absent responses. 

Q.  What should we pray for, specifically?
A. Pray that Clara will be a fighter.  Pray that she will respond well to the medications, treatments and surgeries that she will face and that her condition will be able to be corrected with minimal side effects or lasting problems. Pray that her lung is big and strong and that she is able to use it well to support her life.  Pray that we will have a relatively short stay in the NICU and be able to bring her home to begin our lives together here as soon as possible. Pray that she will not experience pain or suffering and that she will be courageous. Pray that she will know how much she is loved.

Pray also for the medical staff at Forsyth and Baptist Hospitals who will care for Clara after her birth. There will be many neonatologists, pediatric surgeons and NICU nurses who touch her and care for her. We are thankful for the medical community that we will become a part of and pray that God will give these people wisdom, grace, skill and compassion as they care for Clara and for us.

We ask for prayers for our family as well. We know we have some challenging times ahead of us and we are asking that God will give us the strength and courage to face whatever we have to face. We pray that we will continually seek Him during this difficult time and give Him the glory for all the miracles we experience. We pray that the lives of many people will be touched by Clara’s story and that we will be good examples of Jesus’ love throughout this.

What other questions do you have?  We're happy to answer them.  Don't be afraid to ask!

4 comments:

  1. A friend of mine in Nashville posted your blog on his FB page. I guess we share some things in common. We delivered twin boys on August 28th of last year. One of our sons, Thomas was born with a heart defect and the Lord took him home on December 10th. Totally different situations, but I guess reading your journey draws me to you. Children born with medical difficulties bond mother's together. I have been praying for your sweet Clara, for you, and praying for your marriage. My husband and I have been through valley's over the last 8 months that we didn't even know existed, yet God has bonded us even closer. We have met other couples who the stress of sick children drove them apart. Cling to God and cling to each other, that will make you the best parents for Clara. My email is janna.mcgregor@gmail.com. I understand the fear and the peace that you are going through. My son had multiple heart surgeries and we waited in that dang waiting room for hours. I had some "strangers" from blog land reach out to me during our hospitalization, and I believe God must have laid me on their hearts. I would email them at random times because they had walked the path I was on and it was nice to hear I was 'normal' and reassure me. Sounds crazy, but i am just offering that to you if you ever need it. God bless.

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  2. Robyn ( and Jeremy)March 22, 2011 at 11:17 PM

    A friend had your blog linked to her FB page. I was interested and touched to read your story. I too had found out around 18 weeks pregnant that my son had some abnormalities with his kidneys. They functioned normally (good amniotic fluid levels, etc) but something was not right about them. I had numerous ultrasounds/ biophysicals/ level 2 ultrasounds...as I am sure you know all about...had lots of ups and downs throughout the pregnancy. I say all of that, b/c I feel where you must be and where you are with waiting on the little one to make her appearance. I feel that mothers like us have a connection like no others... as not all mothers get news like this during an ultrasound, so my heart and prayers are with you and your sweet baby girl. The Lord was my strength thru my entire pregnancy and He pulled me thru. I was so blessed to have SO many people praying for my son. To this day, he is almost 5 years old and his kidneys are functioning as they should and he is a healthy little boy. We still have to go to yearly appts. at our local children's hosp, but again, prayers abound and we serve such an awesome and amazing God that brings us thru each one and proves time and time again to be so faithful. My son's kidneys still appear on ultrasound to be somewhat abnormal, but they can't pinpoint exactly a name or diagnosis, just what they speculate it to be, thankfully they don't follow all the symptoms of some more serious kidney diseases, and they are functioning as they should be. That said, I have finally come to the realization that I can not think of his future, and worry and wonder. No mother knows what their child's life will be like. I do know that the Lord has said, " I give you THIS DAY, your daily bread"... I have finally realized that all I need to think about is being grateful for each and every day and knowing He provides for us daily and not to be thinking of the tomorrows, as He will take care of them. He is SO faithful. I will be praying for you and your sweet girl. It is awesome to read thru some of these portions of your blog and see your beautiful faith in the Lord and your relationship with Him. What a blessed little girl you have to have such a shining example for a mother, of a woman of such beautiful faith. God will honor these prayers and your willingness to trust in Him for everything. Prayers being sent up.

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  3. We'll be praying for your entire family and you continue your journey into parenthood.
    I read that you were going to try to breastfeed too, and wanted to mention something to you. If for some reason she has problems with your milk or you'll able to create a stockpile of milk in your freezer that's way more than she'll be able to drink, you might consider donating your milk. I'm in NC too, but I've donated thru a bank in TX. It's easy as can be and could give you way to help the other babies in the NICU too. The only thing that you need to know if you're considering it is to keep up with what day/time you take meds and put the days/times on the bags of milk before you freeze them. Once you're able to contact the milk bank, they'll be able to walk you thru the rest.

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  4. meant to add this too... http://www.texasmilkbank.org

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