Doctor's Appointment Update

Hi all! You must be thinkin, "wow! Claire is so great at posting!" Well, my hours are really full with sleeping, sitting, thinking, reading, and people watching, so it's the least I can do. Actually, there are a couple bloggable things today! :) First was my doctor's appointment...

I had an ultrasound done by Dr. Richards, who is the OB in charge of delivering Max, sort of the other half of the dream team working on Max (the first part being Dr. Kays, the surgeon). As he looked Max over, everything was the same. So, not good, but the same. I don't mean that in a negative way, but we are just holding steady I guess. He also confirmed that the heart being underdeveloped is pretty typical in this case, so it's not something to panic about. It comes with the territory he said, so Max should still recover fine in spite of it.

One interesting thing Dr. Richards discovered while looking was the shape of Max's diaphragm. It's not a "straight across" diaphragm like it should be, perhaps with just a gap/hole in it. From one side to the other, it slopes downwards before it attaches to the other side. He said that he has never seen this before, but doesn't really know why it may pose a threat, unless it was hiding a larger defect. So, just a "weird" thing I guess. Jordan said it's because God gave him extra room for his heart and lungs, I say why not! So, I drew some very detailed, quality pictures to help illustrate what I'm describing. Please hold back the accolades and flattery after you see my handiwork.

Here's a normal baby, with the heart and lungs above the diaphragm, with all the extras below. Now, here is my troublemaker...

As you can clearly see in this detailed drawing, complete with big muscles, there is a hernia/hole/gap in Max's diaphragm which allowed all his organs into his chest, pushing his heart far over to the right (and not much below the diaphragm). If you look, you can see how the diaphragm drops down on the one side. This is the anomaly that Dr. Richards described. Who knows, but I guess we shall see in a few weeks.

One last thing...I'm sure you remember my post last night including commentary about Ronald McDonald himself, and my discomfort for the clown? WELL, when I cam home from my doctor's appointment, guess who came to visit all the kids?

I know, I know! I tried to signal to people to run, but they seemed so enamored by him, he must have cast some fast food spell on them. Actually, there was a Christmas in July party for all the kids, and Ronald and Santa came to visit all the kids with presents, etc. The kids were ecstatic, so I'll let it slide this time.
...But don't try to convince me that he doesn't look a bit...suspect.

Love ya'll!
Claire

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Arriving in Gainesville!

So I made it to Florida without going into labor...wahoo! Not that I was supposed to, but it's Murphey's Law that since I needed to get safely to Florida before going into labor, something would try to go wrong! But, nope. So, it was great! My flights were safe and uneventful, although flying first class from Phoenix to Charlotte was ammazinggg, having leg (and booty) space was really awesome with my awkward stomach. Thank you Aunt Kate!!!! She took care of Jordan and my travel needs, and what a burden that lifted. Thank you thank you!! :)

The Ronald McDonald House

So here's my new home for the next long while. The welcome to the Ronald McDonald House(RMDH) was awesome and overwhelming. The people were so kind to me, showed me around, and let me get settled in. And, MIRACLES of miracles, there's wireless internet in the house, so I can blog in my room, and just be connected to the world! Hooray!

Gainesville, FL, is like a jungle! I know that I am a serious desert girl, but this is amazing. The weather is actually pretty nice I think. It's kind of humid, but in the mid 80's and very bearable! This is the view looking out from the front door I just showed you. There's just one thing about the front of the house that I really don't think I want to see everyday...a little creepy......

AHHHHH!! Does he not scare anyone else!? What's he thinking..."Hey kids! Come into my house!" ...No thanks Ronald...I digress.

Tonight when I arrived, there was a church small group volunteering at the house. They brought a huge dinner for everyone, potluck style! Yum! The house manager told me that most nights a group brings in dinner. That is so kind, because every single family staying here is hurting, scared, tired, hungry, or stressed, no exceptions. So, many thanks to West Side Baptist Church, you were a blessing to many tonight!

There was seriously so much: chicken salad sandwiches, honey baked ham, twice baked potatoes, meatloaf, strawberry & spinach salad, sloppy joes, all kinds of stuff!

You can kinda see in the bottom right, the table? There's five tables that seat five, and there's two kitchens like this. I sat with the lady and her daughter in the blue shorts there. The little girl has a brain tumor, that has been shrinking after chemo-wow. It blew me away that every person I meet here has a child in need...it's not all about me ya know. The dinner was a nice chance for me to make some friends and get a "feel" for the house's community. Some people definitely kept to themselves, but who knows what they faced today. The best part about dinner was....

Chocolate treats galore, baby!! :)

Yum, Yum! I can't complain about that at all! These people were so kind. Well, anyways, here's a picture of my room for now. The house manager said that she's moving me into a big room maybe at the end of the week, so that when Jordan comes we will have more room. But, for now, it's more than enough for me! Frankly if we stayed here I would still be happy as a clam at $10/day...I'm so grateful.

Sorry Jordan, I know all my pictures are a bit dismal, but they are all taken with my Blackberry camera! :) Either way, you get the feel for it. Directly to my left is the bathroom, to the right is the closet, and then a nice space straight ahead. If you just imagine me sitting in front of the computer there on the bed, that's exactly where I am right now writing to ya'll! :) One last thing I'll share tonight about my welcome wagon...the housekeeper who preps all the rooms for new people left two turtles on my beds, made by her, with little notes hiding inside. It was a small thing that really encouraged me. If you can see, the fabric says "God Cares", and the notes say "God is Powerful" and "Fear Not". Thanks, housekeeper, for the love! (Clearly a lot of names were thrown at me today...I'll actually absorb them over time I hope!) Here they are:

So anyways, it's been a great night. Got acquainted with the staff, settled into my room, had a great dinner, and lastly, one of the front desk volunteers, Pauley, took me to the grocery store! She is 83, and still rockin'. She didn't have to do that, but offered without me asking...again what kindness. So now I have food to eat probably for a week and a half, and then Jordan will be here with a car soon anyways. Thanks Pauley girl, you are wonderful.

So that's about it for tonight...I'll probably become the world's greatest blogger now, out of boredom, for the next three weeks at least until Max is here! I miss everyone already, especially my husband. Until next time, God Bless everyone!

Claire Griffin

Blogger Extrodinaire and Ronald McDonald-Phobe

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Again We Say AMEN, but It's Still Raining...

Here's Mr. Cutie-pants Max at 35 weeks...just a glimpse of that little face. He weighs about 4 pounds, 13 oz right now! He ALWAYS puts his arm and/or hand in his face, and it's getting "tighter" in there, so the shots are tougher for the ultrasound tech to get. Still, we sooo appreciate her giving us the 3D images every time, it's unnecessary and just a kind thing she does for us.

Now...

We had our last appointment before leaving for Florida yesterday afternoon. My non-stress test was great, Max was moving like crazy and his heart rate is steady and strong. Our ultrasound was a different matter. After the regular brain/head check, chest cavity check, etc, our tech moved onto checking the heart. Until now, his heart has been perfect, in spite of all those organs (specifically Max's stomach) pushing up against it. Today, however, there was a change. The left side of the heart is pretty squished, specifically the left ventricle (lower right of the four chambers). Also, the aorta looks about half the size that it should be...4mm instead of about 8mm at this point. This is potentially very bad because the aorta is responsible for taking the oxygen rich blood back to the rest of the body. Right now, when the blood is pumped from the right side into the left, some of that blood is shooting/leaking back over to the right side because of the small size and pressure on that smaller left side. There's no way to know how serious this is until he is born, and the other organs are out of the way. The heart would then have the opportunity to "open up"...hopefully!!! A positive detail amongst this news is that although the heart is under some distress, the strength of the blood flow through Max's body is good. That means that even though too small, his left ventricle and aorta are still working hard and getting the job done. Go Max Go!

Jordan and I were riding in the car listening to Casting Crowns "Praise you in this Storm" yesterday, and Jordan was saying how that should be our theme song. It talks about trusting God, saying Amen to his will, but wondering when the storm will be over. Man do we feel that! So, a day later, I am feeling at peace with God's will for us, but I am SCARED. I want to bring Max home. So, again we say AMEN, and we're still waiting.

Thanks for your thoughts and prayers, friends and family...

Claire Griffin

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Impact!

Ok...so the realization has hit me that we are having a baby. Don't get me wrong, it was in my head that we were having a baby, but this is different. I was sitting at my desk at work thinking about everything that Claire and I have been though the past few months, and it is seriously overwhelming. This has not been the "perfect" pregnancy, but I wouldn't change it for a thing. We have gone though so much that has brought us closer together as a couple and closer to God. It really is amazing what something like this can do. I had never dreamed that it would be as cool as it is. To see Gods hand in everything we are doing is pretty humbling too.


The other big thing that hit me about Max almost being here is the even deeper revelation that I am going to be a DAD. What?!? Am I ready for this? Am I going to be any good? What do I do when he cries? My mom and dad didn't prep me for THIS! They did a great job in all the other areas of my life, but this is something totally new that Claire and I will have to walk though totally together. I am pretty sure that is how we usually do things though...just jump in with both feet and figure out a way to float. Well, actually, I take that back. I do more of the jumping in without looking. Claire will jump in too, but usually she will have a list of how hot or cold the water is, the depth of the jump, the height of the jump, if she has the necessary tools to make the jump successful and an emergency life vest as a back up plan in case something in the jump goes wrong.


That is the greatest thing about Claire though in all of this. She is such a planner that I really KNOW that everything is going to be taken care of. If he cries, she has a plan. If he is hurt, she has a plan. We are as ready as we can be physically for this baby. It is the emotional and mental aspects of it all that I am still trying to grasp. The fact that our lives are FOREVER going to be different is scary and really cool at the same time. We are going to have a SON. I am going to be a FATHER. This scares me and makes me REALLY excited. Max will be here in 39 days. Yikes...I need to go put my board shorts on...time to jump in.

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We Have A Due Date!

Ok. We officially have a date that they are going to induce! Claire got an e-mail from the OB in Gainesville, Dr. Richards, and he told us that Max will be delivered August 10th. He set the appointment with labor and delivery at the hospital. I really cannot tell you how excited we are at this point. There is less than 7 weeks left before Max is here and we cannot wait! Claire is so excited that she can't even sleep a whole night anymore!

Actually, that is one of the bad things...Max is getting so big and moving around so much that Claire can't seem to get comfortable and has been tossing and turning all night lately. I know that this is supposed to be practice for getting up all the time when he is here, but it still isn't fun. Please be praying for her so she can actually get some rest.

As far as other updates, we have almost finished the nursery and Claire has definitely been bitten by the nesting bug. She decided to redo the downstairs living room at the same time as the nursery so we have spent quite a few hours in Lowe's and IKEA as of late. We will have some pictures to post in the next few days after I get around to hanging the curtains in Max room. If any of you know were we can find Where the Wild Things Are stuff for his room let me know. We could not find any where we registered for stuff, but I would REALLY like to find some stuff. Thanks! That is all for now...I need to go back to work.

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30 Weeks and Counting

Ok wow. Where do we even start? First of all, this is Jordan. I have not really had the chance to get on here and share what I have been thinking about all of this or have the opportunity to update you on where we are with Max.

Well, Claire is now 30 weeks and 4 days preggers. I have not been able to go to an ultrasound and see my little boy for 2 months. We had an appointment at 4:15 with the ultrasound tech and she was a REALLY nice lady. I guess that Claire had worked with her the last few times and really likes her as well. My mom and little sister, Jenna, were also there.

It always blows my mind to see the pictures of Max and the things that technology can do. She took her measurement of his chest and where the organs were. She started to point out the different areas and what we were looking at when she said, "Oh look! He is practicing breathing!" She pointed out the diaphragm and you could see it moving up and down and our little Maximus was letting us know that he knew what he was doing and that he would be ok. I started to cry (I know...I am a big baby.) and was just feeling so very thankful. She said that his right lung looked REALLY big and that there was plenty of tissue there. She was able to find the left lung and see that there was quite a bit of tissue for that one to grow as well! She said, "This one is really fighting to be here."

All of this was just overwhelming for Claire and I as we sat there feeling the tangible love and blessings of God. What did we do to deserve this? I am just feeling like I have screwed up so many times in my life, yet God is consistently faithful to deliver his promises. I love that my God never changes! That wasn't even the best part of the trip though. The ultrasound tech finished with Claire and I and sent the doctor in. He had done some calculations off of the measurements that the tech took and are you ready for this?? He said "Well, I can't explain it, but he is getting better. It doesn't make sense." Claire then shouted, "Yes it does! It is all Jesus! We have been praying!" The doctor told us that his LHR was 3.9. Remember that the LHR is based out of 4.0. This means that our doctor can't figure out how our broken little man is quickly moving into a very low percent of chances that he will have any major issues.

That is really just amazing and a testimony of God's goodness. Thank you all for your prayers and keep it up! We still need it! Thank you again, and God bless you. I am going to hit the sack now...I need to get up at 4am. I'm out!

Oh...and PS: Look at the size of that kids lips and mouth! He definately gets that from his momma. I am really thankful for this!

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I just can't believe it...

Max at 25 weeks. ( A bit chubbier!!)

I love you so much. I love you so much. How does that happen? You are this little...thing. There's a lump that makes me ribs hurt, and my ankles are kind of sore while I stand for 10 hours at work. You are everything. The miracle that God thought I could have you placed in my world has changed everything for me. You are my blessing. I love feeling you move, you little monster inside! When Daddy talks to you at night, I ruin the moment laughing because you roll and move so big at the sound of his voice. I think you have a big bottom, because there's always a lump on one side! I think you are probably so funny. I love you so much. I want to teach you to know how to be kind, when others dont give you kindness, and I want you to protect people who need protecting. I'm pretty sure you are very smart, and handsome. I don't care what you grow up to be, as long as you are humble and do it to God's glory. I feel just a tiny bit of what the Father feels for us when I think of you. I just can't believe it...and I haven't even held you yet.

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23 Weeks and Counting

Just a quick picture! :) This is at 23 weeks, and I'm 25 now. He's bigger now, but I just think this picture is so funny, look at that mouth! The "book" says that at 23 weeks they dont really have any fat under their skin, so they look a bit deflated, and I agree!

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Here's where Max will be born!

Shands Hospital in Gainesville, Florida, is where Dr. Kays is...so that's where we want to be!

To read and/or learn a little more about CDH and Dr. David Kays, check out this website built by parents that Dr. Kays has helped. http://www.realhopeforcdh.com/

We went to Florida at the end of April to have a consultation with Dr. Kays and Dr. Richards, who is the OB/GYN who'll deliver Max. We went first to an ultrasound and OB appointment with Dr. Richards, who immediately made up realize we were in the right place! We got more clarity and answers from that appointment than the many I've had here is Phoenix (every week and a half to be exact! ahh). Dr. Richards recommended that I return at 36 weeks, to begin steroids to strengthen Max until 38 weeks. Then I'll get induced, and if that goes longer than about 4-6 hours I'll have to have a C-Section done to avoid any trauma. After Max is stable, he'll get his surgery done, and have an average of a 5-7 week recovery in the NICU. What a relief meeting this doctor!

Next, we went to Dr. Kays office. He is the Chief of Surgery in the pediatric unit at Shands, and also a professor of medicine at the University of Florida. He spent two hours with us, explaining every part of the surgery and recovery process. It's really intimidating and intense what our little baby will have to go through, but I feel so confident we are in the right hands. Dr. Kays' kids have a survival rate of around 80%, compared to Phoenix's 50%. Also, he projected that Max's "odds" are about 90% of being just fine after surgery, so we are excited that he's confident that Max's situation is very treatable. Then Dr. Kays took us to the NICU for a little tour, to see what we would be coping with after surgery.

Thank GOD for this opportunity!! We are in the best hands in the country, as far as this disorder is concerned, and I'm so humbled and blessed that so many people have been keeping Max in their prayers! So, that's what's new, I am excited about our time in Florida. Other than regular appointments, ultrasounds every two weeks, nothing new should really be happening for the next 10 weeks. Then...BABY TIME! :) I'm 25 weeks now, so actually thats 13 weeks left, but 10 weeks until I'm on maternity leave for work. :)

More to come...

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Meet Max!!

Can you see him and his perfect little face?? :)

He is 19 weeks this coming Wed, and he is about 7 inches long and 7 oz big! I just started feeling him kick and move this week, bringing me the joy and "reality" I've been waiting for. I am so in love with him, I can't hardly describe this new level of love God has shown me!!

Well, Jordan and I were thinking we should get going on blogging this crazy experience. Where to begin?? Well, it only took two months to get pregnant, and that can be almost as surprising as taking a long time to get pregnant. My first trimester was just fine, I couldn't complain! I found that the secret is just to keeeep eating, otherwise I'd get super duper sick and nauseous. But, all that snacking only gained me about two pounds in that first 12 weeks.

Now I'm in exactly halfway through my second trimester...and the story gets interesting!! At my first ultrasound at 16ish weeks, they saw something interesting. That thing turned out to be a Congenital Diaphragmatic Hernia (CDH). What the heck is that? Right...I know. It's something like this...

What is a congenital diaphragmatic hernia?
"Congenital" means "born with." The diaphragm is the breathing muscle that separates the chest cavity and the abdominal cavity. The diaphragm develops when the fetus is about two months old.
Congenital diaphragmatic hernia (CDH) is the absence of the diaphragm, or a hole in the diaphragm. This can occur on either the left or right side, but is most common on the left.
The contents of the abdomen, including the stomach, intestines, liver and spleen, may go through the hole and into the chest. The contents prevent the normal development of the lung (pulmonary hypoplasia) on that side, and may affect the growth of the other lung. After birth the infant will have difficulty breathing if the lungs are not developed enough.

Are you KIDDING ME???? You are supposed to get pregnant and have a happy perfect time!?

But God has His own plans, and I believe in his perfect plans! So, things were scary. As we researched, we learned that the average survival rate of babies with this issue is 50-60%, but God has bigger plans! We found a doctor in Gainesville, Florida, who specializes in this particular issue. For example, "my" perinatologist (high risk pregnancy doc) is the best in AZ, Dr. Mills of Phoenix Perinatal Associates, and he's seen about 10 cases in his whole career. Dr. Kays, in Florida, has seen 120 cases in the last 10 years! This doctor's success rate is 92%! So, we have now realized that this is NOT a matter of life and death, but a matter of getting through a very tough time after delivery.

SO, I'll be induced two weeks early, and I need to be in Florida about two weeks before that. Then, surgery, and an averge of a 6-10 week recovery period. I'll be IN Florida for almost three months!!! Wow, huh? Well, God is GOOOD, ALLLL the time, not sometimes. I feel confident, just a little shocked...it hasn't sunk in. So, I'll be updating this blog as we plan and get new information. Then, in Florida, as boredom sets in, I'm SURE you'll hear from Jordan and I a lot. :)

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