Lovin' The Little Things: May 2009

Christian had a bronchoscopy and laryngoscopy on Friday at OHSU. It had been 7 months since his last {check} to see if he was ready to have the trach taken out.

I get this indescribable feeling in my stomach as soon as I reach the bottom of the hill that leads up to OHSU. It is not necessarily a bad feeling, but I wouldn't say it is good either. Like I said...I am unable to describe it. The smell of the hand sanitizer and the soap gets me every time too. That scent that was all too familiar, reminding me of the past.

We had to have Christian there at 10:15. We were greeted by a lovely woman named Sue. Sue is very good at her job. She greets every person who walks through the door as if they were the most important person in the room. You could just {tell} that she is a woman who knows God. She is a woman who really cares about people and wants to make them feel as comfortable as possible.
The receptionist was Kathleen. She actually said that she remembered me when I was a patient there. Her face did look familiar to me too. Apparently she worked at the front desk in the ward where I had stayed. I felt happy that she remembered me.

After filling out a few papers and waiting just a few minutes, Sue took us down the hallway to the room where Christian would meet with his nurse. The thing I liked about Sue is that she talked to Christian the whole time, directly, like he could understand every single word she was saying. He was intrigued. She asked him "do you know you have a direct line to God?" I wanted to cry. She told him he was a miracle and she was sorry he had to have surgery but she would be praying for him. She asked if he would pray for her too. Sue was {is} amazing.

Christian's nurse was an adorable man named Jewels (not sure how he spells his name though). Jewels has the best smile. He took very good care of our little man.
About 45 minutes before Christian was taken to the OR he was given some Versed to help "take the edge off". When it kicked in he was very loopy and relaxed. After about 15 minutes though the exact opposite happened. He was inconsolable. He was so anxious and uncomfortable. He was miserable. So were we. The nurse said that sometimes that particular drug has that effect. It reminded me of when Christian was in the NICU and was given steroids to help reduce swelling in his airway. Someone had to constantly stand by his side and hold his binki in his mouth and rub his forehead. This time was the same but he is SO STRONG. His body would get stiff and he would throw it in all directions. He practically flopped out of my arms several times even though I was holding him tightly. It was so hard to see Christian like that because it is NOT his personality at all. Soooooo.,..... we will "just say NO!" to Versed. :)

It seemed like hours had passed before we walked Christian to the OR. It had really only been about 45 minutes. When we reached the double doors to the OR, I handed Christian to the female doctor, who was very pretty, and he did not take his eyes off her. Even on drugs he can recognize a pretty gal when he sees one.

We went and waited in the waiting room. Jason stayed home because of work so Shela was at the hospital with us. Thank goodness she could be there. I believe that Shela is my guardian angel. That topic deserves a post all in it's own though. So Shela and I waited.

The surgery did not take long. Dr. Milczek performed a bronchoscopy and laryngoscopy. Basically he just took a look at Christian's upper airway. He had told me that if he were to look in there and see a flap of scar tissue, that he felt Christian would benefit from having removed, he would laser it off. He was also going to put in a slightly larger trach. He went from a size 3.0 to a 3.5. This is because Christian has grown and the trach tube opening needs to grow as well, otherwise he could start to feel as if he was breathing through a straw. Makes sense.

After the surgery Dr. Milczek met with us in the waiting area. He sat next to me and told me that Christian tolerated the surgery extremely well (that's our boy!) and that his airway actually looked better than what he expected it to. (Yay! good news!) He then told me that he did not feel confident that Christian's airway issue was one that would take care of itself. (My heart stops.) He never will say anything for certain when it comes to an infant but that was his opinion. He believes that Christian's airway was narrow from birth. It was either underdeveloped due to extreme prematurity or it was birth defect of some kind. We will never know. But there was no way to know at the time that Christian's airway was extremely narrow. Then having to have a breathing tube administered so he could survive, did not help the airway, but again was absolutely necessary for Christian's survival.

He talked to me about reconstructive surgery. He said it would be a lot of work to get it done. It would involve removing a portion of one of Christian's ribs to create some sort of stint for his airway. He was thinking about possibly doing this in one years time. Of course, he would not say for certain the time and said that regular re-checks would be made before the decision for reconstructive surgery. He told me to keep in mind that things ALWAYS CAN CHANGE.

Coming out of anesthesia was tough....extremely.

If there is anything I have learned it is that it is always best to look on the bright side of things, think positive, trust in God. I KNOW all these things and yet, I can not, for the life of me, keep the warm tears from falling down my face once Dr. Milczek left the waiting area. I was not prepared to hear the "reconstructive surgery" part of the conversation. It scares me. I have no idea what all it would mean, the statistics, etc. It is difficult to think of the additional surgeries in Christian's future, especially the "more difficult ones." So I sat there, thinking positively, trusting in the Lord, and unable to hold back my tears. It is all part of being a parent.

Dr. Milczek wants us to come back on June 25th to try a Passy Muir Valve. This is a speaking valve for tracheostomy patients. We are very excited about this (as you can imagine) and looking forward to this visit very much. Do you know that I have never heard Christian even cry? (except for when he was 2 pounds and it was a squeak.) I mean, we know our son and know what the {air} sounds like when he is laughing and crying, but a REAL cry.....no, not even once. If he is able to tolerate this valve {I have a great feeling he will} then we can start teaching him to TALK! I get emotional just typing that. This sounds weird but I can't WAIT to hear my baby {cry}. I mean what kind of parent wishes for that? But imagine having never heard it? In a few short weeks, God willing, we will hear Christian make sounds galore. My heart can hardly stand it. I am beaming with joy from the very thought of it.

We are a family that trusts in the Lord and we believe that all things are possible through Him. We know God has special plans for Christian. We are also well aware that OUR plans are not HIS plans.

We all have a long road ahead of us with this trach business. But it is just one tiny aspect of Christian and our lives. Yes, he is a boy with a trach~ BUT he wears the trach, the trach does not wear him. What I mean to say is that Christian is just the same as every little rambunctious, fearless, strong, witty and charming little boys I have ever met. He has no idea that he is a little {different} and anyone who is around him for 1 minute would feel the same way.

So we keep on moving forward....loving this life that the good Lord has provided for us. Praying for continued peace and strength in all things that come our way {even scary reconstructive surgery}. Trusting and knowing that all is {and will be}as it should be.....trach or no trach.

Celebrating this joyous life.

Ever since I was a little girl, I dreamed about becoming a "mommy." My favorite toys were always my babydolls and stuffed animals. When it would rain outside I would dress them in pajamas and wrap them snuggly into soft blankets. I would hold them close to me and tell them "don't be afraid, Mommy is here. " I would line them up, side by side, along my bed. I did everything I could to make sure they were safe and warm. They were my "babies."

Now I am a {real} Mommy.

I BELIEVE with all my heart that God chose me to be your mommy, Christian.

We have been through a lot, me and you, and this is just the beginning.

You are such an amazing kid, Christian. You are changing every day. I am so proud of you, darling boy! The mother in me wants time to pass slowly so that you stay my "little boy" longer (even though I KNOW this is not an option).

Being YOUR mom has been quite the learning experience so far.

You have taught me that cheerios, fishy crackers, and peanut butter crunch all taste better when eaten directly off the floor. The mother in me realized that this was a battle I was bound to lose and therefore does her best to keep the floor as clean as possible........but still..... (cringe).

I have learned that it is OKAY for you to be messy. This is how you learn to do things on your own. The mother in me has issues with this, but I am doing better. I just stand ready with a hot wash cloth in hand when your done doing your thing.

I have learned that being a mom means that you always have to do what is best for your child. Even if it means painful shots, trach changes, suctioning, saline drops, surgeries, foot sensors, and mist collars.

It all gets done because it HAS to BE DONE, my sweet child. It is MY job to be strong, stay calm, and take care of you.

The mother in me wants to take away any discomfort and pain that will ever come your way. I would gladly bare it all for you if I could. Just know that when you hurt, I hurt. My heart is linked directly to yours.

Those are just a few of the many things you have helped teach me Christian.

The list goes on and on.

This Mother's Day I want you to know that I am so very proud to be your mommy. You are such a blessing!

This is a picture of me holding you for the FIRST time. I held you close to me, wrapped snuggly in a soft blanket, and I whispered in your tiny ear "don't be afraid, Mommy is here."