Tuesday, March 10, 2009

Gosh, this has been a long year. It leaves everyone questioning, how much can this little boy go through. It was a year ago that I was on hospital bed rest and wondering if my little boy was going to make it to viability. It was also a year ago that a neonatalogist came in my hospital room and gave the grim details of what it would be like to have a micro preemie (a baby born on the age of viability 23-26 weeks gestation). At that time, I remember sending out an email saying that Hunter's chances would be 50/50 with a severe risk of disabilities, developmental delays, speech delays, and the list goes on... The disabilities could range from mild to severe and could be a number of things. Hunter will be one years old on April 1st. What has the year told us?

I can't express how hard this year has been. I also can't express how many times I heard "It's just too soon to tell", Or "If only we had a crystal ball". One word describes it all: anxious! I can't say how many nights I have laid awake, staring at the ceiling, and wondering "Oh my gosh, what is the love of my life going to have to endure" Or, that knife jabbing pain right through the gut seeing him suffer. It just makes you buckle.

Then, Hunter smiles! It makes it all worth it. All babies depend on there mom's for foundation and support, he is my rock. I have never known of anyone to be tested or put through as much as he has gone through. He is the strongest person I know. He is my hero!

Going back to disabilities and being warned from the neonatalogist, I told the doctor that I didn't care. I do not believe in anything else. If born at 24-26 weeks, my baby will be resuscitated at birth and we will deal with whatever life throws at us from there. Being born at the low range of viability, we had our hands full and knew it. Nobody ever sugar coated things for us. And, as time is telling - PREMATURITY SUCKS!

We went to the eye doctor yesterday. We knew that Hunter was going to be severely nearsighted. The doctor had more news for us. Hunter vision is at least 20/200 and may be less than that. This makes him "legally blind". Yes, he can see but his vision is very limited. All of a sudden all these questions about the future start to feel your head and were left again wondering where the damn crystal ball is. DOES ANYONE HAVE ONE? What will school be like for him? Will he be able to drive? Will glasses help? Hold on Renee, we are back to this - one day at a time!

So, with that said - Hunter was fitted for glasses yesterday. They are hoping that the glasses help. This is when things get a little complicated. In May, we will go back and see his ophthalmologist again. This will tell her if his condition can be corrected with glasses or if its another problem called : cortical visual impairment. CVI is a condition where your brain doesn't register what your seeing. It could be a result of his brain bleeds right after his birth or his severe prematurity. We are back to this again...sitting on our pot of anxiety...waiting for two months to pass to see if Hunter's vision will be corrected with glasses or if nothing can be done.





As I have done from the beginning, the only way I have gotten through this is with the help of God and positive thinking. I have to put all the "what if's" in the back of my head and deal with today. I have to believe that things will work out exactly how they are supposed to.

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference

This situation is out of my control. I am thankful that he is here. He's here and that's all that counts! We will get through our next bump in the road. Hunter's glasses is on order and will be here next week. I will send out a picture with him in his glasses. I have to admit, babies and kids in glasses are adorable. We tried his frames on yesterday. He is really cute. Let's just pray that this works for him.

We had two appointments yesterday. Hunter was seen at the developmental clinic at St. Joe's. The other was his eye doctor. On a different note, they believe Hunter to be MILDLY (I like this word) delayed with his motor skills. It goes along with his prematurity and isn't bad enough to change anything or change what were doing. It's strange to say this but it feels like home every time we go back to St. Joe's. We see the people from the NICU and they are like a family to us. It is a very warm and inviting. I have said this over and over again. The NICU is a group of great people who I owe everything too. They aren't concerned about much and believes Hunter to be a physically strong and active baby boy. We are going to try the cheerios thing with him. This is putting him in his bumbo with a tray, and watching him as he works on his fine motor skills and tries to lift cheerios to his mouth. According to them, its amusing to watch because they lack fine motor skills. I will send out pictures, or post a video. Hunter's new game: watching as he tries to lift cheerios to his mouth. It sounds so easy, but then again - he aren't a baby or a micro preemie.

Hunter remains on oxygen but does really well. At his last pulmonary appointment, they reduced him to .25 liter. He is doing well on .25 liter and his oxygen saturation remains between 98-100%. His next Pulmonary appointment is on March 31st. We will see what happens.