Tonight as I sit here typing away at my laptop in my bed, I can hear the beautiful sounds of Jack Johnson through the monitor. Hutton is tucked away so sweetly in her bunny bed and the rest of the crew is settling down for the night. The music is more than a tool that we use to lure Hutton off to sleep. It IS HER. Its Hutton. Just like the sweet smell of vanilla. Its not just the flavor of her formula and the sweet sweet smell of her. It IS her. So many things that trigger emotions in me that remind me of HER... my miracle.
I am assuming if anyone is still reading this blog after my "little break", you also read caringbridge and know that Hutton was recently in the PICU with Strep throat and a respitory virus. Bringing us crahing back down to reality that we have a sick baby. A baby that was SERIOUSLY ill with strep throat. A baby that, as I sat in her hospital room, I wasn't sure if she was strong enough to get rid of this nasty virus she had. I don't know WHY I wouldn't think that she wouldn't be strong enough. This sweet baby girl is the strongest person I have EVER known. She kicked it in the rear and came home. A few days later... sick again- back on oxygen. I feel so helpless. I am so tired. I can't imagine how tired she must be.
This post isn't about me. Its not REALLY even about Hutton. Its about how God has provided for us every single time. I have been an emotional wreck today. Most likely because I am sleep deprived. The weather was NASTY today. Flooding rains. Hutton had a doctors appointment. I soooo didn't want to get out but it was her cardiologist appointment and I knew she needed to be seen. So off we went and as soon as we approached the office building the heavens opened up and the rain poured. In my head, I keep saying, " this is the day the Lord has made. Let us REJOICE and be GLAD in it. REJOICE...REJOICE....REJOICE. Not working. Just being honest here. So here we go, in the pouring rain with a baby, a stroller, a diaper bag, a suction machine, and don't forget the oxygen, to see Dr. Bremer. Did I mention that Hutton is soaked with puke?Well, she is. Now for the part of God's sweet provision. Dr. Bremer! Oh- how we LOVE her! She was who God provided to me today to keep me from jumping ship. Don't worry! I don't mean jump ship as in abandon my family or take my own life or anything silly like that. I just mean... jump ship EMOTIONALLY. You know- have a breakdown. She is a very gentle, soft spoken woman. Its kind of weird to say "woman". She looks all of 22 years old. She is BRILLIANT. So smart. She has NEVER doubted Hutton. To me, that means she has never doubted God. I am thankful for that. You see, while ALL of Hutt's doctors are brilliant and capable, they can only do so much. It is all in HIS hands. I feel sorry for the doctors who don't know that. Can you imagine taking on the responsiblity of life or death? Me either. Everytime Hutton goes into surgery, we place her in sweet Lisa Montenegro's arms and give her a kiss. It is a powerful moment. Powerful because we are REALLY placing her in God's arms and PRAYING that the outcome will be what WE want it to be. That His will is what we have prayed for.
For the most part, I am doing great. Hutton is doing WONDERFUL and I am so excited and down right giddy about it. Other days, I see no end in sight. I see no end to her suffering, no end to her being trach free, no end to suctioning, no end to surgeries, no end to her refusing to eat, no end to her not walking like most babies her age. I just remembered another one of God's sweet provisions for me today. It came in the form of a grandmother and grandfather. We left Dr.Bremer's office and headed to the main hospital for labs. The waiting room was filled with sweaty, "flu looking" kids. No thank you... we will wait in the hall. We stood for at least an hour waiting for Hutton's name to be called. A sweet couple who were waiting for the elevator turned to see this BEAUTIFUL baby sitting in her stroller, hamming it up for anyone who looked her way. That would be Hutton. The sweet lady nudges her husband and points to the cute smiling baby who is cocking her head to the side as to say, "aren't I precious". Then she sees it. She says to her husband- "Oh! I think thats a trach. Is that a...". Then she looks at me. Shes trying to figure out if I heard her and if I did, was I offended. I say to her (smiling of course),"yes mam. She does have a trach.". The lady looks relieved that she hasn't hurt my feelings. She tells me that her grandbaby is in the NICU and they have been told that he will need a trach. I wanted to throw up. I hope they didn't see the terror in my eyes. I reassured them that she was doing great with hers and that she is getting better every single day and she didn't even need her vent anymore and that she was hopefully going to get her trach out by the end of summer, and it really wasn't that bad, and.... then it hits me. When they said Hutton needed a trach, I was DEVESTATED. I was OVERWHELMED. It felt like the end of the world. But guess what. It wasn't. She IS doing great. She DOESN"T even need the vent anymore, she WILL get that stinkin' trach out soon. All this shall pass. God will CONTINUE to provide. He is faithful. He is powerful. He is my father and I love him.
Thanks for letting me ramble here tonight. Sometimes it feels good to just talk about these things. We will all be fine- thanks be to God!