New Pictures and Insight

Here are a couple of the pictures we were given yesterday of Noah!

Also, I saw this on another blog and on a few websites and I wanted to share. Although I am not yet raising Noah this describes some of the feelings I have had during this pregnancy. Hope this gives some a better understanding.

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things... about beautiful Holland.

25 Week Appointment

Well not much has changed with Noah, in three weeks his arms and legs grew about a week again, so they are at about 17 weeks now give or take a week. We are beginning to see some bending in his arm bones and also in his ribs from fractures reforming. His chest is small, his heart takes up a disproportionately large amount of it so that's still not good. The Dr. told us that he is leaning toward Osteogenesis Imperfecta. This is basically Brittle Bone Disease, but Noah has a severe form of it. He won't give a definite diagnosis until after he's born, but that is his best guess and Aaron and I are tending to believe him based on what we are seeing. Anyway, we decided I would be delivering at Mercy by C-Section and we will get as close to term as possible. We can tell our Dr. isn't very optimistic about his survival past birth but he won't say that he won't live either. I think so that we can keep hoping.

On an up note, we were given some cute pics of Noah again, which we will post as soon as we can get them to a scanner. He is definitely a thumb sucker! : )

Family Time

Noah and I are enjoying time with family this weekend. Right now my parents have nine english bulldog puppies. Everytime I hold one, if I put it on my belly, Noah decides to fist bump it. Everytime. I've decided either he wants to pet it, or my belly is his own personal space and he's trying to push it off. If he's anything like his daddy and me, he is a dog lover already. Family time, cookie making time, puppy playing time, movie watching time -- all equal a good time.

Dr. Appointment Update

Just a quick update today. I had my regular Dr. appointment today. Noah still has a strong heartbeat at 154. His heart has always been strong from the very first appointment. That first appointment the nurse had told me not to be upset if I didn't see a heartbeat, that it was still early. But at 5 weeks 5 days, his heart was already beating away. Anyway back to the appointment. The Dr. didn't have much to say other than she knows how difficult it must be right now. She told us we would be completely transferred over to the other doctor. I also learned that I will more than likely be delivering at Mercy or at OU. 


That's all the update I have today as far as the appointment goes. I will tell you that Noah decided he was starving at 6:30 this morning. To the point I got out of bed, ate a bowl of cereal, then went back to bed. And of course he's already hungry again. So I'm off to find something else in my fridge.

Good Tastes

Today was a better day. Noah wouldn't wake up for Aaron this morning before work, but on my way to work an Alan Jackson song came on and he started fist bumping me.  My child already has good taste in music. We had a good visit with my grandparents this evening. I'm reminded everyday how wonderful my family is. Anyway, not much to post today, but I like keeping notes on new things with Noah. I don't know how long I'll have him, so I'm making sure I remember everything I can. So for today, I will remember who Noah's first favorite singer is. (besides me of course!)

Finding Comfort

     I wasn't sure how I would handle today, going back to church for the first time since getting the news about Noah. Not well, it turns out. I'm glad I went because I definitely needed it. Part of my problem is I don't like to cry in front of people and it seems that today, that was all I was able to do.  All I did through the songs. All I did through the sermon tonight (which was great by the way, I definitely needed to hear it, but it definitely dealt with some fresh feelings I have.)
     I want to apologize for leaving so quickly to anyone that might have been wanting to talk to me after church. It seems that for now, I can't even handle getting a hug without breaking down. I want to apologize for this blog being the only way I can talk to any of you about this right now. I hope to eventually get to the point to where I can talk to anyone that has questions in person. I'm just not quite there yet. Aaron and I want to thank everyone for all of their prayers and encouragement, I know that we wouldn't be able to get through this without any of you. I also know that we will need plenty more of your prayers in the months to come. We love you all and are so thankful for everyone.
     Today I was looking for comfort scriptures. I find this is one of the most calming things besides prayer that gets me through a rough day. I thought I would end this post with the ones I found today. 


"I know, O Lord, that your rules are righteous, and that in faithfulness you have afflicted me. Let your steadfast love comfort me according to your promise to your servant." -Psalm 119:75-76


"Sing praises to the Lord, O you his saints, and give thanks to his holy name. For his anger is but for a moment, and his favor is for a lifetime. Weeping may tarry for the night, but joy comes with the morning." -Psalm 30:4-5


"God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling." -Psalm 46:1-3

Small Milestones

Small celebration from a proud mama - Noah started fist bumping me hard enough yesterday to see my belly move. Then this morning, Aaron was talking to him and he started punching my belly again in response. They went back and forth for a little while. Life's simple pleasures.

"This is the day that the Lord has made; let us rejoice and be glad in it."

-Psalm 118:24

I Just Haven't Met You Yet

I think this blog is going to end up being like a therapy session for me. Getting thoughts out just helps somehow. Anyway I was singing Michael Buble's song "I Just Haven't Met You Yet" and realized how much it suits our situation. Buble sings it about a future girlfriend/wife he hasn't met yet. I think from now on I will be singing it for Noah.

I Just Haven't Met You Yet

I'm not surprised, not everything lasts

I've broken my heart so many times, I stopped keeping track

Talk myself in, I talk myself out

I get all worked up, then I let myself down

I tried so very hard not to lose it

I came up with a million excuses

I thought, I thought of every possibility

And I know someday that it'll all turn out

You'll make me work, so we can work to work it out

And I promise you, kid, that I give so much more than I get

I just haven't met you yet

I might have to wait, I'll never give up

I guess it's half timing, and the other half's luck

Wherever you are, whenever it's right

You'll come out of nowhere and into my life

And I know that we can be so amazing

And, baby, your love is gonna change me

And now I can see every possibility

And somehow I know that it'll all turn out

You'll make me work, so we can work to work it out

And I promise you, kid, I give so much more than I get

I just haven't met you yet

Pictures

We've decided that Noah has A's nose. : ) As for how we are doing today, all I can say is better than yesterday. We are learning the meaning of taking it a day at a time. I have a feeling I will be living off of the verses from Matthew 6 telling us not to worry about tomorrow. They have a whole new meaning to me now. So for today, my Noah is giving my belly fist bumps as if to say, "Today, Mommy, I am here," and today that is all I need.


Matt 6:25-30, 34

"Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes? Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Who of you by worrying can add a single hour to his life? "And why do you worry about clothes? See how the lilies of the field grow. They do not labor or spin. Yet I tell you that not even Solomon in all his splendor was dressed like one of these. If that is how God clothes the grass of the field, which is here today and tomorrow is thrown into the fire, will he not much more clothe you, O you of little faith?


Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own."

Level 2 Ultrasound Results

We're back from our level 2 ultrasound. Aaron and I could tell some differences between this ultrasound and the last without the doctor having to tell us. Here goes the list of what we were told.  

Skull - narrows a bit at the front, not a clover leaf shape which is good, but the narrowing is present in several types of skeletal dysplasias.

Arms and Legs - Only grew about a weeks worth, so they are now about 7 weeks behind (not good) Also, the femurs are starting to look bowed and they didn't look that way at the last ultrasound (this is one thing Aaron and I noticed looked different without the doctor pointing it out) The bowing is a sign of osteogenesis imperfecta - there are different types of this, some lethal and some not.

Chest - His chest isn't quite as big as it needs to be. The Dr.told us at this point it could go either way. Either we will continue to see signs of the chest slowing in growth or it will continue to grow. From what Aaron and I understand it is his chest that we should be most concerned about. If his chest does not grow like it should he more than likely will not survive long past birth.

 The Dr. told us at this point that it could go either way and gave us about a 50/50 chance of bringing Noah home. He said it was good to stay positive but that we need to have a little reality in the back of our minds about things not going the way we hope. Right now he said there is no way to tell what exactly Noah has. We probably won't be able to know until after he is born. He also told us there was nothing that Aaron or I did to cause this.

 Right now, we are still kind of processing things. Just from the last ultrasound to this, Aaron & I could see changes for the worse. No mother should have to hear "You have a 50/50 chance of bringing your baby home." Right now we are continuing to just pray. I think my prayers are more what's best for Noah at this point. If he will be good with us, that we can bring him home as healthy as possible. If he's better off in heaven with our two other babies, that Aaron and I will have the strength to bear it.

I want to thank everyone that has been and is praying for us and for Noah. You have no idea how much we appreciate it. We will continue to need prayers for the remainder of the pregnancy. We have an appointment next week with our regular Dr. and we go back to the perinatologist on the 28th to check Noah's progress. I will post some of the pictures we got as soon as I can get them scanned to the computer, we have a very beautiful baby boy.

"Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness." -James 1:2-3

Level 2 Ultrasound Scheduled

Our Level 2 ultrasound is scheduled for Tuesday, December 7. Hopefully then we will have more answers as to how Noah is doing. Thank you everyone for the kind words and for the prayers as we have been waiting for answers.