Two Feet!

We have some very exciting news! Noah is going to be a BIG brother! Baby Henderson is due May 3rd, 2014.

Please let me tell you that I am hanging on somewhere in between scared out of my mind and extremely happy. I have been experiencing lots of "morning" sickness as well as being so stinkin' tired! Oliver is so excited and tells me we are having a girl baby. He reads his "Big Brother Book" every night before bed. I love that he can understand the concept this time around. He was so young when I was pregnant with Noah that it pretty much went right over his head. He is already such an awesome brother to Noah so I know he will do great with the new baby. And I know Noah will love the baby, too. I've been babysitting a little 4 month old baby girl on Thursdays for the past few weeks and Noah just loves to hear her talk and laugh. He smiles so big when we put them on the floor to play together. He is such a sweet boy!

I am having routine prenatal care as well as seeing a Maternal-Fetal Medicine Specialist. They are "high risk" doctors that deal with situations like ours. I am considered high risk for two reasons: Noah having a genetic condition and also for having preterm labor with him. We will be trying to determine gender fairly early, around 12 weeks at my next appointment. If we discover the baby is a boy we will be going forward with some invasive procedures to test for PMD. My doctor said the chances are overwhelmingly in my favor of not having another PMD baby since I'm not a carrier of the mutation. But if we want to know for sure we have to test.

Please keep all of us in your thoughts and prayers. This is a scary/exciting/emotional time for our whole family. But we have to give it to GOD because only He knows what the plan is.

Here is a post that I wrote right when I found out I was pregnant. Please read it and know where my heart and mind are set for this new life I am nurturing.

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8/23/13

I know I will not publish this entry for awhile. But I want to write it so I know exactly how I felt at this moment. Last night, August 22, 2013, I took a pregnancy test and it was positive. I was in immediate shock. I began to shake and had butterflies in my stomach. I honestly couldn't believe it. But it was such a clear, strong positive that I knew it was right.

I thought I should be freaking out. But I honestly wasn't. I have had the biggest sense of calm come over me in a way that I have never felt before. I said a silent, but lengthy prayer to God in Heaven. I told Him that I know this is His plan and I know He will make this make baby safe and healthy. That it my biggest prayer for this child. Healthy. Period. I know God knows what is in my heart. He knows my inner most desire for this baby. And I have complete trust and faith in Him that everything will be fine. Nothing goes unplanned by God.

I feel like this baby is a chance for healing. I have so much emotional trauma that haunts me from Noah's birth and this is a chance to mend my heart. I don't want anyone to think that I am "replacing" Noah with a baby that is healthy. That's not what I'm doing, by any means. I love Noah with all of my being. And I love Oliver just as fiercely. And this new baby will be a great opportunity for both of them. Hopefully for Noah, the baby will be his greatest therapist. As the baby grows and learns to do new things, maybe Noah will learn along with him or her. And for Oliver, he will have someone to play with and someone that gets how hard it is to have a disabled sibling. Also, if Nathan and I pass away, Oliver and his sibling will be able to share the responsibility of caring for Noah.

I love my children more than anything else in this world. And I love this new baby. This new, tiny, still only a few cells, baby just as much. I know it will be hard. Since when is having children easy? I know the challenges we will face. But I know we will get through the tough times together as family and become just a little but stronger each time.

If you couldn't tell I'm pretty excited for this new gift to our family. Nathan is excited, too. And just a fun fact for you: I have been pregnant every year since 2010. Woah! This baby is due May 3, 2014 :)

8 weeks

Timing

Sorry it's been awhile but I've been extremely tried lately. Usually I write after I put Oliver to bed but recently I find myself knocked out before I can even manage a shower. I really do feel bad for not posting anything in such a long time so please accept my apologies and my promise to try to stay on top of my posts!

Nothing super exciting is happening with Noah lately. I have posted a few new pictures and videos on our What Do You Do With A Miracle? Facebook page of things we have been doing but as far as medically relevant updates.... I got nothin'! Which is good! It means he is stable and just being Noah. Our next big appointment is coming up though on the 30th.

Noah will be going to Dell Children's and put under anesthesia for a scoping procedure. Some of you may remember when he was a teeny tiny newborn he had to have this done. He was about 6 days old. I was completely terrified about him being put to sleep and completely terrified of what they would find during the procedure. I still get really nervous about him going under because sometimes it can be hard for kids with low muscle tone to fully wake back up and be able to breathe on their own. But it's a really fast, simple procedure and it will answer a lot of questions about Noah's airway. I will definitely post an update after the appointment!

But what I really wanted to write about today is timing. Not ours, but God's. Sometimes things just happen so beautifully in our life and we take all the credit. And then on the flip side when things go wrong, we blame someone, something, or even God himself for "screwing up." But God doesn't screw up. He doesn't make mistakes. He is the most Perfect, the Creator, the Giver of Life, the Healer. He makes it all happen whether it is what we want or not. It is what we need. And that's why He makes it happen. And it doesn't matter why these things happen. There is no need to ask questions. It doesn't matter why someone is sick, why you lost your job, why someone wins the lottery. It's doesn't matter because we will never know the answer. All we need to know is that God is in control.

I am writing this to serve as a reminder to myself. Because a lot of times I get caught up in the "why" of everything, especially when it comes to Noah. But if I can just hold on to my faith and remember that this is all planned by the Ultimate Planner then I can relax a little bit and try to enjoy life instead of question it.

Home

September 4th, 2012, Noah was discharged from the NICU after a long 8 weeks. Every day since his birth we traveled to the hospital, scrubbed our hands at the NICU entrance, and sat in Noah's room for hours at a time. Some days when we were there we couldn't even hold him or touch him. So we sat and watched his monitors instead. I learned a lot in that little room. I knew what every alarm and bell meant. We were taught how to care for Noah's tracheostomy and g-tube. We learned that our lives had changed forever.

There were a lot of preparations that went into bringing Noah home. We had to get set up with a nursing company as well as a durable medical equipment company. About a week before discharge, a guy from the equipment company came and dropped off all of Noah's equipment. Overwhelming is an understatement. He showed me how to work all of the machines and basic trouble shooting. Then he left. And I had a living room full of stuff. Where do I put it all? How should I set it up so that it's easy and functional? That was totally not something I was really prepared for. But in the end, with some tweaking from nurses as we went along, everything has a place and most things are labeled so that it really is easy and functional.

We had to do 2 nights of "rooming in" at the hospital. Rooming in means that we had to do 100% of Noah's care for 2 nights. The nurses didn't do much except come in and check on us every so often. They were there as a safety net in case something happened. We had to bring all of our own equipment, too. The first night was a Thursday night when Nathan and I stayed. Then Friday night, my Mom came with me since Nathan had gone back to work. Everything went well on both nights and we were all set for discharge on Tuesday!

On Tuesday, Nathan and I were so antsy. We arrived at the hospital a little before noon since we were told that discharges usually happened between 12 and 2. There was a lot of waiting around and there was also a little girl in very critical condition that was getting admitted right next door to us. Needless to say, we were very low priority and hardly saw any nurses the whole time. Finally I stepped out in the hall and asked what was going on.... we were so beyond ready to go.

And that was it.... we were free!

We got Noah in his stroller and walked up and down the halls of the NICU, saying our goodbyes to everyone that had taken such good care of our baby. They truly saved his life and they mean more to me than I can ever say.

It was a weird feeling driving away. That was it. It seemed so anti-climactic for such a traumatic time in our lives. I was sad and scared and happy and anxious all at the same time. I knew we were trained so well about how to take care of Noah's medical needs. But I still didn't know him as my baby. He was so hard to figure out. He cried and slept. Slept and cried. I had nurses telling me he was having seizures and telling me to medicate him because he was crying so much. It was frustrating that I couldn't take care of him without someone standing over us making sure I was doing it right. I still get frustrated in that way sometimes. After a few blurry months things did get better. I figured Noah out just as he had to adjust to new surroundings and life outside the hospital.

It was hard and continues to be a challenge each day. But I am so glad we are home. I would never have it any other way. Yes, our home is a mini-hospital and we have people here all the freaking time. But I am so in love with my Noah and so happy he gets to be home with us. This first year home has taught me so many things. Not only medical things but things about myself. I had to learn how to be an advocate. To stand up for myself in a world where everyone has their own agenda. I had to learn how to network with others and research things to help Noah. I know I am a much different person now. Maybe slightly more grouchy but also stronger and more independent than I ever thought I could be or would have to be.

Happy 1 year Home-iversary, Noah Jack!

I love you with all of my heart!

First time at home in his bed.