Wednesday, April 29, 2009

I think one of the hardest things is to watch as your child suffers and not be able to do anything about it. We are home now. But, Hunter is so miserable. I wish that I could take all his pain away and put it on me. They sent him home with Tynelol 3. I can only give it to him every six hours. After three hours, he is in severe pain. I am watching him very closely. I have him constantly hooked to his pulse oximeter, which is not something I usually need to do. When he gets upset, his heart rate climbs to crazy levels like 220 BPM. It is crazy! He isn't playing, or attempting to do anything. My poor baby is just lying there. Please pray that he gets better soon! This is awful!

We are also still slowly trying to get him up to his full feeds at home. We are moving slowly and working our way up

Tuesday, April 28, 2009

Hunter was discharged today. Although, we are having a hard time getting him to tolerate his full feeds. He is also in a lot of pain. It is horrible. The doctor ordered us to return to his normal schedule of feeding. But, he can't handle all of that. Tim and me discussed it. We decided that we were going to start slowly introducing food to his stomach. We hope to work our way up. I guess we are making the executive decision with our son right now. We have had so many people tell us so many ways to feed Hunter. We aren't sure what's right or wrong. We decided that we know our son the best. We also learned that slow is better when things aren't tolerated.

I have thought about this many times. Although, Hunter is not as critical as he was when he was first born, I can't decide which is harder. It's almost like a race. When you first start out on your race, your going full speed ahead. Towards the middle to end, you start slowing down and its not as easy as what it was in the beginning. We have also seen Hunter at his very worst. We have also seen him at his best. Sometimes I think that ignorance is bliss. If we didn't see all the things that could go wrong, we wouldn't worry so much about him now. Physically, emotionally, and mentally - I am slowing down and it seems like things get harder as you go.

Hunter gets his G-tube

Hunter has his surgery today for the G tube placement. The surgery itself went well. In fact, it was quick. One minute they were whisking him away. By the time we got down to the "big bird" in Mott's, they were telling us that he was done. They were able to remove the ventilator without any events. Thankfully, the PICU was not needed.

Then, we got up to his room and the tone changed a little. Hunter started to have jerking. It looked like he was having seizures..again. So, I called the nurse and had her come in. She saw what I was talking about and put a request in to Hunter's neurologist. They did an EEG. I still haven't got the results back. I'm sure I will get them back tomorrow. The jerking movements went away after 45 minutes though. The Neurologist was comfortable to say that it was a reaction from the medications given during surgery.

After that, Hunter was having a poor urine output. Okay, warning sign went off. This is what happened a couple times after his surgery in the past. I knew this wasn't good. The turned up the fluids and his urine output got better.

I got to talk more to the neurologist about Hunter's Cerebral Palsy diagnosis. I asked her on a scale of 1 to 10, how severe does she believe it to be. I told her 1 being the normal/most mild case to 10 being severe Cerebral Palsy. The number she gave me was 2. If he has Cerebral Palsy, I prefer him to be a 1 or 2.

Hunter has been extremely uncomfortable today. My poor baby cried so much. It was awful because it was a "I'm in pain mommy" cry. Ugh! I hate those. The nurses and doctors would not give him more than just Tylenol for the pain. I got a little frustrated and after much begging, pleading, and becoming a little pushy (if that's what you want to call it), I was able to get him the medication he needed. After he received the "good stuff", he fell asleep and was very comfortable. Needless to say, I was a little frustrated with the whole line they gave me about "were going to give your baby Tylenol and let him scream in pain". I just wasn't taking that to well. The "good stuff" was much better for him tonight.

Bare with my grammar. I'm exhausted! You might have to read between the lines to understand this email. I'm sorry.

He will be at U of M Mott's tomorrow, possible discharge then. It might be extended to Wednesday. They are slowing introducing foods through his "G" tube. Once he gets back to his full feeds and is tolerating it, he will be discharged.

Friday, April 24, 2009

This is a hard one for me to write because writing this makes the situation more real. I'm still in the process of trying to accept it. A part of me thought about stalling this announcement because then I could deny it - just a little bit longer. Then, another part of me felt that writing this email will help me to accept the situation and move forward. I can't tell you how many times I have broke down and cried from Hunter's appointment yesterday. I also can't tell you how many "what if's" has run through my head. As tears are still rolling, I can say this is agonizing. I received a difficult diagnosis for Hunter yesterday. Hunter had an MRI done a couple weeks ago. The MRI did not show anything significant. His brain bleeds were gone and there is no evidence of having them whatsoever. They had NO affect or damage to his brain. The condition never turned into PVL (a condition that turns your brain to swiss cheese following the bleeds). His cerebellum is a little small and it could cause a slight issue with balance. All this was great news. However, the neurologist examined Hunter. Hunter was diagnosed with cerebral palsy. It is a very mild form of cerebral palsy. The neurologist does not believe he will be confined to a wheel chair. He WILL walk, run, play, jump, etc. But, he might be a little clumsy doing it. It could also cause him to have a delay in walking or reaching certain milestones. She still believes that Hunter will walk long before he starts school. But, instead of walking at age 2, it might be age 3. When CP is mild like Hunters, he could overcome it all together. He will always have the diagnosis. But, you may never know it if I didn't tell you. This diagnosis will open up the flood gates of help for Hunter. Hunter is being referred to a rehabilitation doctor. In addition to the physical therapist comes to my house, Hunter will see another physical therapist that specializes in cerebral palsy patients.

A couple things about cerebral palsy: 1. it does not affect intelligence or cognition. 2. There are MANY different ranges of CP. Cerebral Palsy is not always the “poster child” in the wheelchair. In fact, it is very possible and common that children have CP and you would never know it. I think this is Hunter's category. At least, I hope. 3. Cerebral Palsy is not progressive. It will not get worse. It is what it is.

Sometimes I feel as though my inner strength is being tested. I have to admit this has sent me in a whirlwind. Yet, I still try to remain positive. I made an oath in the beginning that I was going to fight, alongside Hunter, through this damn prematurity and all that comes with it. And, I still will do this. Hunter has overcome so much already. I'm convinced that with everyday stretches, the assistance he receives from the doctors and therapist, and the work I do with him at home, Hunter will overcome this. It will just be one more miracle to add to his plate. So, now we stretch every day. Hunter's Cerebral Palsy is in his legs only. His official diagnosis is “Mild Spastic Diplegia”. He has normal muscle tone above his hips. I do have many things to be positive about. It could be SOOO much worse. At least, he was diagnosed and his help can start early in life. There are treatments for Hunter's mild case of CP. The neurologist said that the rehabilitation doctors will discuss Hunter's options. A lot of unanswered questions still, but if he was going to get CP, this sounds like the best type to get - a very mild form.

I will still say this over and over again. Prematurity sucks! It is heart wrenching! Please pray for Hunter that he overcomes this. Hunter's first steps are going to be a huge celebration! He WILL get there! I will make sure of that!

Sunday, April 19, 2009

Make an on-line slide show at www.OneTrueMedia.com

Hunter is still doing well during the day with no oxygen. Night (sleep time) has been difficult and he has definetly needed it.

Last night, I went into his bedroom to check on him. He was in a deep sleep and his oxygen was sitting at 97%. Although, 97% is a good number and would not warrant anything wrong, it didn't sit easy with me. 1. I knew Hunter was on oxygen, 2. When Hunter is on oxygen at night, he never leaves 100%. I walked up to his crib to see what was going on with little man. I found his nasal cannula out of his nose, oxygenating his eyeballs. This, however, will not help his lungs. Then, I realized..."OH MY GOSH, HUNTER IS SLEEPING WITH NO OXYGEN". So, I turned off the oxygen and put Hunter through another test trial of sleeping without oxygen. This has been so hard for him. Two hours came and went, Hunter remained at 96-97% oxygen saturation. Could this be? Could it be the time to take the oxygen away? Well I'm not convinced yet. I put the cannula back in Hunter's nose because I was falling asleep. I didn't want to leave him without oxygen without being closely monitored. Although, the monitor would sound off with this loud piercing noise if something was wrong, not only would I be awake - our neighbors down the street would also know that something was wrong. I didn't want to rely on a machine to let me know if my baby was okay.

See, when I'm testing Hunter - I can't just rely on a machine, I'm in his room checking on his color. Blue is not a good color for him, but - unfortunately, a color I have seen way to much. I also check his respiratory rate to make sure that he isn't working too hard to breathe on his own. I am also monitoring his heart rate. A higher than normal heart rate would mean that it is too much work for him to be off oxygen. A lot, goes into monitoring him. Last night he was doing great. His heart rate was staying low, his respiratory rate was normal. Although, I was in tears and overly excited that he is sleeping, with no oxygen, it will take more time to really say for sure if he has overcome the last leg of the oxygen journey. If not now, it won't be long. That itself, is so exciting. For the next couple days during nap, and nights at bedtime, I will leave the oxygen off. Pray for Hunter! We know he can do it!

I think about where we were a year ago. If somebody told me that I would be taking away his oxygen - I would never have believed him.

Although, I should be happy and I am...A part of me is scared. Taking away my baby's oxygen is nerve racking and stressful. How do I take away something that has helped my baby breathe his entire life? So, I am overly cautious and want to do it when the timing is right. I don't want to rush it. I want to be completely confident that when I take away his oxygen for good, its because he can do it. He can breathe without it. The doctors told me that one day he won't need it. I prayed for this day over and over again. But, I didn't know how scary it would be. So, cautious and safe is the word for now...okay, maybe a little paranoid...but, I saw that Blue is an ugly color. I never want to see that again. I, also, know that his very serious heart condition can come back if he doesn't maintain his oxygen saturation. Call me crazy...but, I'm not looking for another PICU stay. He's my world!

Thursday, April 16, 2009

In my April 9th entry, I wrote that Hunter will need a "G" tube surgically placed. He needs this tube due to a couple factors. The first factor being something called Tracheomalacia. That is the fancy name for underdeveloped swallowing muscles. The other factor is an oral aversion. Oral aversions can occur because when most babies are experiencing there positive and satisfying experience with a bottle, my baby's first oral experience was with a ventilator to keep him alive. This was not a postive, but negative experience, therefore creating an oral aversion. Those are the two main factors that are contributing to a feeding intolerance with Hunter.

We met with the surgeons. Hunter's surgery is scheduled for April 27th. If all goes according to plan, he will be admitted in the hospital for 2-3 days after surgery for observation. Hunter will need a ventilator for the surgery. Babies with Chronic Lung Disease can sometimes have difficulties coming off the ventilator after surgery. We don't suspect this will be problem, but it is definitely something to consider. If Hunter has a hard time coming off the ventilator after surgery, they will have a bed reserved in the Pediatric Intensive Care Unit (PICU) for him. Again, this is a small chance since Hunter's lungs are doing a lot better.

Monday, April 13, 2009

So, what happens the week that Hunter comes off oxygen - Yep, everyone in our house comes down with a cold. So far, Hunter isn't showing any signs - but close observation now is necessary.

Yesterday, we decided to quit monitoring him on his pulse oximeter during the day time. The doctor wanted us to monitor him for one week. I can't explain how scary it is to take oxygen away from a child that has always needed something to help him breathe. Because of that, I monitored him a little longer than a week. He has done so well and I'm just being super cautious, maybe paranoid a little. I'm mom and that's my job, right?

Last night, we noticed that the kids were sneezing and coughing. I was feeling pretty congested and tired. Tim was also feeling something. Today, I woke up to a full blown cold. I was hoping it was my allergies. It is just our luck. The week that Hunter comes off oxygen we all get sick.

Can you feel my frustration? I have to pray that he does not come down with anything. It could set him back if he does.

Thursday, April 9, 2009

One year ago today, I got to hold my baby for the first time. I could only hold him for 10 minutes, but it was the best 10 minutes of my entire life. I will never forget those moments. They will stay with me for the rest of my life.

I am having a difficult time this year, trying not to relive what all we have went through. Last year at this time, Hunter was extremely critical. I wasn't sleeping. It was just a really bad time last year. They told us that it was going to be a long road, and boy - they were right! It has been a long road. Hunter has been such a strong boy and has conquered so many obstacles, jumped over so many hurdles, and still manages to keep a beautiful smile on his face. He is amazing. He is an amazing little boy to know. He brightens up a room, just by his presence. When I think back to all that we have been through - the details are frightening. And, the only way I can explain how we got through it was by the Grace of God and Prayers. Our battle has been very much worth it, because we have Hunter. The scary part is that our road is not over. Hunter is still dealing with feeding problems. The "G" tube will be placed shortly. Our consultation with the pediatric surgeons is next week. This has been very frustrating. It isn't about sticking a bottle in his mouth and making him eat. It is not that easy. All the different signs to look for during his feeding time. You have to make sure that when he denies the bottle, you don't force it. If you force it, it could create more of an oral aversion. I have to mix rice cereal with the formula to make it a thicker consistency. This is because his swallowing muscles aren't fully developed. Aspiration is always a concern. A feeding tube is another story in itself. We have to make sure that the feeding tube is correctly measured, inserted into his stomach correctly, or the food could aspirate into his lungs - causing a major set back for Hunter. We also have to mix baby food with rice cereal to give Hunter the extra calories to grow.

Hunter is doing well without oxygen during the day (wake) hours. Although, he still needs oxygen at night or nap (sleep) hours. His oxygen saturation must stay above 93% during the day or night. During the day, he has no problems. At night, he drops to 90-91%. It is border line; but I'm not taking chances. A low oxygen saturation could make his Pulmonary Hypertension return. That is a serious heart condition that scares me.

Hunter went in today for an MRI. They ordered an MRI because of the seizures he had in January. They wanted to take a closer look at his brain bleeds back in the first. This was an event that I wasn't expecting. They treated it as if it was a surgery. The anesthesiologist was there, they put him under, stuck a vent down him, and did the MRI. They had to do this to keep him perfectly still during the procedure. Afterwards, he was sent to recovery. He was monitored to make sure he woke up, had no reactions to the anesthesia, and was able to hold food in his belly. He did fine. We were at the hospital all day though. We haven't received the results back yet.

Monday, April 6, 2009

I want to start with the good news first. It's always nice to start on a good note. Hunter appears to not need oxygen anymore during the day. Yay! He does really good throughout the day. The only time Hunter runs into trouble and needs oxygen is when he falls asleep. His lung doctor wants his oxygen level to stay above 93%. At night, he only drops to 90-91%. It's not bad, but enough to need the oxygen at night. Anything below 93%, could bring back his Pulmonary Hypertension. Pulmonary Hypertension is a serious condition that has to be taken serious. For now, Hunter will remain on oxygen at night only! I can't tell you how good it feels to carry my baby around the house without an oxygen cord trailing behind him. Okay, for the other news. Hunter had a swallow study. The results were that Hunter has underdeveloped muscles that help him swallow. It is causing him to aspirate some of his formula into his lungs. The only way he can build these muscles is too eat. This could be the reason he has needed the feeding tube this long. The good news: his muscles will develop with time and practice. For now, Hunter is growing out of his NG tube. He has lost the cannula off his face, the tape makes his face break out in a rash, and he won't quit pulling it out. There is no other option but to surgically place a "G" tube into his stomach. I am waiting for the pediatric surgeons to call me back. We will meet and schedule his surgery. I will keep everyone informed. Believe it or not, this will probably be the best thing for Hunter. It is amazing what these little micro preemies can go through, yet - what they can overcome. The feeding issue is a hurdle that Hunter needs to cross, but I know he can do it with time. He has already overcome so much! Okay, on a cute note, Hunter is getting his first tooth. It is so adorable.

Happy First Birthday Hunter!

You had a great birthday party. Grandpa Bubba, Great Grandpa McKeen, Great Grandma Brindamour, Tiffany, Paul, Chase, Morgan, Jennifer, Matt, Kendall, and Logan came over to celebrate.


Happy First Birthday Little One!

Tiffany cooked a yummy chicken dinner. You received two outfits and one pair of pajamas from Grandpa Bubba. Great Grandpa McKeen bought you an outfit. Great Grandma Brindamour bought you two outfits and a pair of pajamas. Tiffany, Paul, Chase and Morgan bought you a cute puppy that talks. Jennifer, Matt, Kendall, and Logan bought you some cute toys - the kind that you can hang up, reach for and chew on. You love doing that. Mommy and Daddy bought you a jumper and a dog that will walk and encourage you to crawl after it.

Also, today was the first day that you did not have your oxygen or feeding tube in. You did good without it. Although, it seems like you still need it at night. Mommy feels so bad to not have your overnight feeds, but the doctor really wants you to try to eat without the feeding tube.

Your day was full of everything I wanted it to be for you. You received so much love and smiled so much. You were a very happy baby today.

Your day ended falling asleep in Grandpa Bubba's hands.