James and I began this blog at the very beginning of our pregnancy with Wyatt to share and update our new adventures as we became pregnant and start the new season of parenthood. Sixteen weeks into pregnancy, I had to go into surgery to ensure our son would not come too early and shortly after, we found out Wyatt has Congenital Diaphragmatic Hernia (CDH). This is our humble attempt at being transparent and hopefully sharing the joys and love of Christ through this roller coaster ride we're on. And now to share even more with the new miracle on the way.

Wednesday, October 10, 2012

Day Ninety

I decided to type this one out in the blog first instead of a text message to our family.  I figured it'd be easier, faster and hopefully less typos.  (Yes, I am very aware of them all and they kill me to see but sometimes I just don't care.)

On Wednesday mornings I have been going to a women's bible study- really a book study, Francis Chan's Crazy Love.  I've done it once before when the book first came out but I know God can use the same text and shine a new light or even an old one for that matter in my life.  I was looking forward to this week but sadly had to miss.  I can get some pretty bad allergies in the fall/winter/spring seasons.  Praise God for my one season off and it just so happens to be my favorite.  Last year wasn't too bad and again praise God because I was pregnant.  But 2 years ago, it was awful.  I missed 9 days of school and all my PA would say was my body was working over time to fight my allergies which didn't allow my body to fight everything else.  She never gave me any prescriptions except chicken noodle soup and rest.  Well, yesterday I could tell my allergies were kickin' it up a step and I cannot afford to get sick right now, especially anything to do with the lungs... well, anything at all really.  I wouldn't be allowed to see Wyatt and I just cannot fathom missing getting to see my little boy every day.  I love my time with him.  So I went in to my general practitioners office today just to stay a step ahead.  They agreed and gave me a steroid shot.  Amazing.  No one has offered me one of these.  I heard of all these other people being offered one and even being advised to get them multiple times a month.  I am hoping this does the trick.  So anyway, I went ahead and just drove on down to Parkland after my appointment, getting there around 11ish. 

For those of you that don't know how it works at Parkland- it's partnered with UT Southwestern, which makes it a teaching hospital.  Wyatt has multiple nurses, a dietitian, neonatal nurse practitioners and attending doctors.  Children's works somewhat the same way.  He does however have the same surgeon but he's been seen by more then one pulminologist (lungs) and cardiologist (heart).  It's been just about every two weeks or so we get a new attending doctor (they're in charge and have the final say).  We've been happy with all of them, each for different reasons.  Some took some time to warm up to and get used to their way of doing things.  Some have moved at a quick pace, some work on trial and error and others the speed of molasses.  We had Dr. Ennis a couple weeks ago and she's one that moves at a quick "let's get his done" pace and then we have had Dr. Kang the last couple of weeks, whom moves at a bit of a slower pace but was still a let's get him into surgery and home sooner rather than later (she also had him about a month ago as well).  Now we have Dr. Stewart.  She's never seen him before as well as his new NNP. 

So, new concerns were brought up today and rightfully so considering he had more blood in his poop as well as some more spit up at night.  Up until today, these things were happening but no one really seemed to be that concerned about them and then it's like it built up and all this concern came about between yesterday morning and this afternoon.  Again, all rightfully so and we back what their concerns are and what they are saying.  With all of that said, I will say it felt kind of like a kick in the gut kind of day.  Until this point these things have been happening but not enough, especially during the day with his spit up.  It wasn't being conveyed through the night nurses to us that they were as concerned about the volume of throw up... and maybe it's that they really weren't until recently.  We aren't upset, it just sucks, for lack of better words.  All of a sudden we heard the words GJ-tube again as well.  They had been thrown out like a month ago but wasn't really brought up again.  We were really debating NG vs. G-tube. (Quick reminder: GJ-tube is a feeding tube surgically placed into the intestines bypassing his stomach- this helps more with his reflux.  NG tube- what he has now coming out of his nose emptying into his stomach, ND tube- what he had going through his nose that emptied milk into the opening of his small intestines, bypassing his stomach and the G-tube which is surgically placed into his stomach.)  We were praying NG and dealing with that at home, as Wyatt or us for that matter, could pull it out easily causing him to aspirate in his lungs (very, very, very bad!) or the g-tube.  We went with the doctors and nurses with the decision of the G-tube.  An already super long story made not any longer, Dr. Stewart consulted the GI team and general peds surgery team today to let them know about the increase in bloody poop and to ask about the G-tube vs. GJ-tube.  This resulted in everyone canceling surgery plans for tomorrow and putting it on the books for next week to hold a spot but with it being still up in the air as to him being ready or not.  So discouraging. 

Dr. Stewart used an analogy of "If you hear hoofs on the ground, you don't look for a zebra, you look for a horse."  And what she meant by that is you start looking at things that happen more often than not.  In our situation, there is a concern with the blood, obviously and that is ultimately what we need to figure out before surgery.  So, the first thing they want to do, was to take Wyatt off my breast milk immediately and put him on a "natural" formula that is mostly already broken down and less work for his body to process.  This is just for the next 4 or so days while I discontinue eating ALL dairy products.  This also includes whey and casein stuff.  You'd be surprised at what all this includes.  This is another very drastic and sudden diet change for me.  I love milk and cheese and chocolate and the list could go.on.for.ever.... But it's worth it, just like pumping 6 times a day for my son.  On the formula, if it is the milk protein that is upsetting him and causing the blood, it should lessen or stop completely and we can reintroduce my new dairy free breast milk.  If nothing changes or if it gets worse, GI comes in and we'll go from there.  That's the zebra Dr. Stewart was talking about. 

So, here we are.  I ate as much dairy as I could today and will discontinue all of that as of tonight.  {That bag of already bite size cut chocolate chip cookie dough will just have to wait!} Thankfully, I grew up with a loving, intelligent daddy that is a dietitian.  He'll help and support me as well as James' loving aunt who has taken me in as her own that is a personal trainer and nutrition intellectual!  She already has eliminated dairy from her diet and can help.  We'll get this done and it will be good. 

God has really been faithful in each and every single day of this process.  I'm not saying it's always easy because IT. IS. NOT. EASY!  But I cannot imagine going through this without this faith God has so mercifully given me.  James is strong in some areas and me in some areas.  And together we hold each other up and accountable to His good word.  I am the optimist (most of the time) and he is grounded and expects the worst possibilities and hopes for the something closer to the better.  God is constant.  God is ALWAYS good, even when times are difficult.  And God will never forsake us, forget about us, or stop loving us and being there for us.  He will not give us more then we can handle but broaden our shoulders to make us stronger.  My faith in the Lord is bigger than I ever imagined it could be and I know I still fall short often.  It has been a difficult day.  I knew it would be when I woke up but it's in such a different way.  I have to surrender all my fears and worries each and every day... sometimes multiple times a day a lot of the time.  Ninety days is a long time.  I was asked today how we do it by someone who has been in the NICU for 3 weeks.  And I had to answer, it's not easy but God is good and He has given us strength. 

I am on my knees tonight begging for strength and courage for James, myself and for our STRONG, SWEET, RELAXED 3 month old boy, Wyatt tonight.  I beg to the Lord that the doctors to know what to do or for God to just straight up heal all of him.  He is a God of miracles and I still firmly believe He can do this.  Please join us in praying.  We are so thankful for each and every one of your prayers.  I know there are so many people out there reading this, some we know well and some complete strangers.  Thank you, Thank you and Thank you.  God listens and God hears.  Even if you aren't sure about Him- He is there and even though this situation seems so sad or so awful, it's still good because He has made himself known and he LOVES.  He loves us and he loves Wyatt more than I can even dream (and I love that boy with all my heart and soul) and He loves you.  My hope is that each of us feels His presence right here and right now and for always.  I beg that I feel his arms wrapped around me intimately like I know He is doing. 

God is good, always.  Thank you for keeping up with us and our little family of three.  :-) 

Also, please pray for all the other CDH families around the world.  A couple of babies went home to Jesus this week and one is on ECMO.  We aren't the only ones. 


  1. Wow Case. Heartrending and uplifting all at the same time. So sorry for the twists and turns and so thankful He is giving you the faith and strength to bear it. Praying for all of you.

  2. You guys have the most amazing strength! It is really awesome to see but heartbreaking that you have to go through this. Continuing to pray!

  3. I just want you to know that I admire your strength. Our child was diagnosed with CDH at 18 weeks and we are preparing to deliver in January. I plan to set up a blog for our friends and family as well, but have been reading up on others to get an idea of what we can expect. I only hope that my husband and I will be as strong as you and your family are today. My prayers and thoughts are with you. -Erica

    1. Erica, I am so sorry I am just responding to this. I have to say that our strength doesn't come from us. God has been so faithful in sustaining us! I will be praying for you and your little warrior!!! :-)