Tuesday, March 31, 2009

Yesterday, I sent out the exciting news about his oxygen. There are big changes ahead. Not only are they telling me to try him off oxygen, Hunter's pediatrician wants the feeding tube to come out too. I know...jaw dropping! Here's the master plan...

Hunter hasn't been doing any better with his feeding tube. Things have stayed the same. He is not taking in the calories that he should be orally. This is why the feeding tube has been needed for this long. But, Hunter is getting stronger. The feeding tube is held on by clear like tape called tegaderm. Hunter has learned how to pull the tape off his face, pull out his feeding tube, pull his nasal cannula (for oxygen) off his face, and the round bandaid like tabs that hold the cannula on his face. I can not keep anything on his face. Needless to say, I am inserting NG (feeding) tubes 3-4 times a day. For anyone that knows anything about inserting a feeding tube, it's not fun! It's especially not fun to do it on babies. It's a complete nightmare to insert one on your own baby. I cry every time I have to do it. Seriously! I have tears rolling down my face. When he was younger, I only had to insert the feeding tube once every two weeks or so. But, not any longer. It is more difficult now. The days are becoming so frustrating.

So, to go more in depth...Hunter's feeding schedule consists of 4 feeds throughout the day and a continous feed at night using a feeding pump. This pumps formula into Hunter through the feeding tube for 7 hours overnight. It's a computerized system. I just have to set the settings on it. Using simple mathematics, I tell it how much to give to Hunter and the time to give it. I press start and it does it's job. I go to sleep, wake up in the morning, the bag that once held the formula is empty and Hunter is content.

The doctor is looking at all angles of Hunter's appetite.

The doctor wants to know if Hunter is not eating because he's just not hungry. Every couple hours throughout the day he gets food. At night, he is continously getting food. So, OUT THE FEEDING TUBE GOES. Let's see if he gets hungry! We are going to do this until Friday. I will see his pediatrician on Friday.

Also, Hunter was suppose to go in for a swallow study last week. That was rescheduled for this week. We are going to see if something is going on internally which is creating a feeding problem.

If Hunter still refuses to eat, the swallow study comes back good, and then the doctor can rule that he has an oral aversion and will schedule Hunter to have a "G" tube placed. A "G" tube is a surgically placed feeding tube into Hunter's abdomen. This is last resort. We are really trying to figure out something else first. If Hunter has an oral aversion, all we can do is continue to introduce food to Hunter, and work with occupational therapy.

An oral aversion can be caused my many things. One of those things being that Hunter was on a ventilator and oscillator for so long. This is all through the mouth. The tape to hold the ventilator is around the mouth. When he was a tiny micro preemie in the NICU, this could have sent a negative signal to the brain. The negative signal being that all things in and around the mouth are bad. Therefore, creating an oral aversion. The ventilator and oscillator can not be fun! The NICU was very careful to avoid this, but sometimes it can happen and we were warned about it. So, this would not shock me. But, I want to hold on to the hope that Hunter is just not hungry. Allowing him to get hungry throughout the night, might make him take more food during the day.

Again, Let's pray for Hunter

What? No Oxygen?!

The big question is: What is Hunter doing?

Right now, Hunter is playing, hooked up to a pulse oximeter, and his oxygen TURNED OFF COMPLETELY! That's right! I said NO OXYGEN!

I can barely keep my composure right now to type this out. I'm so excited and nervous at the same time. Hunter had an appointment with his Pulmonary Doctor today. His Pulmonary Doctor feels that right now is the best time to test Hunter. He believes that Hunter is ready. For the next week, Hunter will be monitored 24 hours a day. His oxygen will remain shut off (unless he needs it), and we will see how he does. If his oxygen does not drop below 93%, Hunter will permantely be removed from oxygen. Hunter has an alarm on his pulse oximeter. It will sound off at 93%. At night or during the day, I will know if he drops. I don't have to sit in front of this machine 24 hours a day. It has an obnoxious beep. The beep won't stop unless Hunter's oxygen levels raise back up.

The pulmonary doctor predicted what may happen. He believes that Hunter will be okay during the day (without oxygen). At night, may be a different story. He predicts that Hunter may still need oxygen at night. Why? We'll because at night everyone's oxygen level drops to some degree. Hunter's may or may not drop too low at night. He says that it is very common for micro preemies to come off oxygen during the day and need it at night for a month or two longer.

If his oxygen can come off during the day, he is so close to it being gone period. So, the next week will be nerve racking. Let's just pray and cross our fingers that his oxygen days are over!
I thought I would be excited for Hunter to come off oxygen. Don't get me wrong. I am so excited. But, with that excitement comes a scared and nervous feeling. Hunter has always needed something to help him breathe. He had the oscillator, the ventilator, CPAP, and nasal cannula. Now, they want me to have him breathe on his own. This time is here! I hope just he can do it. I would love for him to have this off his face. I can't wait!

Hero of Hope

Hunter will have a board at the March for Dimes event in April. The Board will be called "Heros of Hope".

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.