Tuesday, September 22, 2009

Occupational Therapy: (Feeding Difficulties)
We are doing messy play with him. This is where we dip his toys in baby food. We allow him to play with his toys with food on it. As he lifts the toys to his mouth, he will taste the food and our hopes is that he will gradually become comfortable with having food in his mouth.


Physical Therapy is a little more extensive.

Physical Therapy: (Cerebral Palsy - Muscle Tone)

Leg stretches are done twice a day. Hunter hates his leg stretches. I know he can feel the muscle burn. But, its so important.

We try many exercises. Another exercise we try is sitting Hunter on our knees; we support his back with our thumbs as he sits straight up. We, then, rock back and forth without allowing him to lean back. This helps strengthen his trunk.

We are also working with blocks and having Hunter put them in a bucket.

We are starting with the intense therapy with Hunter. Some items that

Monday, September 21, 2009

I'm awake staring at the TV. I'm not comprehending anything that's on the TV, yet I turn it to the most boring channel - the weather channel - hoping that I will be able to sleep sometime tonight. Yet, it just isn't happening any time soon. Why? My mind is racing again. It's racing over worry, fear, and the one million unanswered questions I have that no matter how hard I try to google the answer - it just has no results that fit into what I'm looking for. I seek that crystal ball because that would be the one thing that might be able to help me sleep. The closest thing I have is the magic 8 ball that can answer "yes" "no" "maybe so" and so forth. What box did I pack that away in back in 1989. So, I take my next plan of action: I get out of bed and come to my computer. With the hopes that maybe, if I write everything down, journal it - I may be able to sleep tonight. So, with that say...

Before my experience with extreme prematurity, I never thought about the person that sneezed in the grocery store? Or, the person walking in front of me that lets out a cough? I never had to think about this. I've always been healthy. Why would I think twice about this? I drank after my friends. I went to there house when they had colds. I got a cold, so what! In fact, my entire life - I have been a nail bitter. I started to bite my nails before I could walk. I have no recollection of ever starting to bite my nails. It occurred when I was too little to remember. Nail biting has to be the most nastiest habit and the easiest way to spread germs to oneself. Yet, I do it.

Now, after Hunter is born - I can't help but to think about that person that sneezes two aisles away in the grocery store. My thoughts are "Gosh, I hope she doesn't come by me. I don't want to take germs home to Hunter. I need to dodge out of here." Or, the person that let's out a cough within a close promixity of me, "Should I walk quickly in the other direction?" It's so hard to be around a group of people and not want to ask each one of them, whether or not they are sick? How long must I remain this vigilent about Hunter's health. How fragile is he now? The answer is: I don't know. So, where do I ever find that peace of mind when I'm around someone who sneezes, coughs, etc without worrying about hurting my son from being in the same place at the wrong time.

Now, there is a new set of worries, frustration, and all the unanswered questions back from the NICU days are coming forward. Will Hunter have cerebral palsy as a result of his prematurity? At the time he was in the NICU, the answer was: "It's just to early to tell" Now I know, yes, he does have cerebral palsy. What now?

Hunter started at UM MedRehab Milestones clinic today. And, I found out more about his condition. First, its not mild as I was originally told. It's more on the moderate stage. His cerebral palsy is the reason for his developmental delays. Meaning, the reason why he has less strength in his truck, why he is not walking, why crawling is a slow process, and even his eating troubles is a result of the CP.

And, to make matters worse. His eye sight is poor and this is hindering his ability to develop normally.

So, this is what Hunter is faced with. The strength in Hunter's truck is something they can work on, build up, and strengthen. But, for the first time today, I heard that it is highly unlikely that Hunter will be able to run, play, jump and be a "normal" child. As he gets older, his CP is telling a story. Is a part of me hoping this therapist has no idea what she is talking about? Of Course! Hunter is being seen by a CP specialist in the beginning of October. Here, they will make the determination, with the recommendation from the therapist, that Hunter needs braces for his feet and ankles. It will also be decided what medication to start Hunter on for his CP, and if Hunter needs a walker now. They said that Hunter is not a severe CP case. He will still be able to live independantly as an adult, but possibly with a walker.

I don't normally speak of my emotions. I usually leave my emotions out of any of these emails, but you know what - I just can't anymore. I have been through so much and I'm not scared for the world to see how this affects families, mothers, fathers, siblings, etc. I have learned something through my process. When you're speaking to the people in the medical profession about serious conditions that your child has or has had - if you show any amount of emotion - things start to become sugar coated. I have learned to hide my emotions because I want things straight forward. I don't want things sugar coated. The only time it was not sugar coated for me, Hunter was in the NICU. They were always straight forward and I highly respect each of them for that. So, with that said. My stomach was in knots. I was holding back the tears. But, got into my car and instantly started to cry. I sat in the parking lot for a good 45 minutes crying.

I just don't understand, why? I wish that I could take his disability upon myself and have him live a normal childhood free from all his hardship. In some aspects, its just not fair that my life was full of a happy, free, go lucky childhood, in which, I ran track - a distant runner nonetheless, and was a cheerleader through Jr. High and High School years. Now, I have a son that might not ever be able to experience half of what I did. And, that tears me up to the bone.

Then - God sent me a message. Right then, crying in the parking lot for 45 minutes, I look up. There was a girl in a wheelchair. I would say her age was anywhere between 7-11 years old. She was trached, with a ventilator attached to her wheelchair, and her mom wheeling her into the MedRehab milestones building. And, I first said to God..."Yes, I got your message. And, thank you because you have blessed me with such the most wonderful, amazing, strong, happy, loving, baby boy - that could possibly get through this and still be able to run, play, jump and do everything a normal kid can do. But, if he doesn't and he needs braces, inserts for his shoes, or a walker, he is such an amazing gift Lord, and thank you." It was then that I realized it could be so much worse.

And, this is why I can't sleep tonight. I keep thinking about me crying in the parking lot because my son might need braces on his feet, or a walker. I keep seeing the look on that mother's face as she was helping her daughter through the door. How dare I become so selfish to my own feelings and forget that I'm so lucky to have him. How dare I forget in that 45 minutes his entire road. How could I cry? It could be so much worse. And, if the only thing I'm dealing with is a walker and braces - he is and will always be a miracle baby.

Who am I to doubt the strength of God? He has proved to me that he does perform miracles. In reality, Hunter shouldn't be here. But, if its met for Hunter to walk, play, jump, and run - he is going too. I will continue to exercise with Hunter, stretch, and follow the advice of therapist and doctors. Most importantly, I need to find my own strength once again. There are times, like today, that really bring me down to my knees. Yet, God always sends me these messages. I, truly believe that God sends us all messages like this one. But, it takes us having our eyes wide open to see the messages he sends us. So, please friends - keep your eyes wide open. When you're having a bad day, look for those messages and be thankful for your ability to get out of bed each morning, take a deep breath, and go about your day with no special devices helping you. Wow! How lucky we are! Hunter is so lucky. He could've been that little girl in the wheelchair, trachead, and on a home ventilator. He isn't and he is getting stronger every day.

Wednesday, August 19, 2009

This will be a quick journal entry, but something that I wanted to make note of...

Hunter said "momma" for the first time tonight!

Sunday, August 9, 2009

I've been pretty lazy about writing in the journal. I think that summer has occupied my time in other ways.

Hunter has been doing better. It seems that since they have increased his Viagra dosage for his heart, he slowly started to improve. He is off oxygen again during the day, although he still needs it at night. I will wait until this next week, when he sees his pediatrician, and talk to him about what he feels about doing a sleep study on Hunter and his oxygen requirements. Although, I know this will probably be in the hands of his Pulmonary Doctor.

They switched Hunter from his Neosure formula to a Nutren Jr. Hunter still has his oral aversion. I wish that I could say that it has gotten better. But, is isn't and he is fed through his G-tube. Although, this sounds awful, I'm so thankful they he has the G-tube. It has kept him alive and growing well. He has gained 3 pounds since May. This is pretty impressive.

We are still working on his developmental delays. Hunter still has not mastered how to crawl and sitting up is still sketchy. He can sit up, but not for long. It is a work in progress. But, he has an excellent Physical Therapist, who is diligently working with him to get him where he needs to be on a development scale.

It has been a struggle. I will never, ever say this has been easy. But, it has been so worth it.

Tuesday, July 28, 2009

Okay, a quick review...the last message that I sent about Hunter's heart condition (Pulmonary Hypertension) wasn't the best news. In May, Hunter had an echocardiogram. He outgrew his medication dosage and they wanted to see how well he could handle his heart condition without the medication. The answer to this was that he couldn't handle it without medication. Hunter needed the Viagra to control the PH, the pressures weren't up on the right side of his heart, and he was requiring more oxygen. He was so close to coming off oxygen and this set him back. Ugh! I was really discouraged and disappointed. His cardiologist increased the Viagra dosage to accomodate his weight and waited to see if Hunter would get better. His appointment with the cardiologist was a lot better today. His pressures were a lot better and they tested him off oxygen. He passed with flying colors. I had them paint me a picture and this is what I learned. When they are looking at the pressures in his heart, they are looking at the systolic pressure on the right side of the heart. I think I explained this, but ... just in case...the right side of the heart is responsible for pumping blood into the lung. The lungs oxygenate the blood, pump it back into the heart and our left side of the heart is responsible for pumping the oxygenated blood to our body. Hunter's lungs are scarred and damaged from the two and a half months that he spent on a ventilator and oscillator (high pressure ventilator) right after his birth. In addition, His lungs were so premature that they barely existed when he was born. This created his lung problems. Therefore, the right side of the heart has a problem pumping the blood into his lungs to be oxygenated. Pressures build up in the heart because its working hard to get the blood into the lungs and this creates PH. In severe cases, PH can be fatal. This explains my concern for his heart condition and my excitement that its very well controlled. So, back to the systolic pressure. Babies blood pressure is a lot lower than ours. Today, Hunter's blood pressure was 87/39 (Perfect). A normal person's systolic pressure in there right side of the heart would be around 10-15. A person with PH has higher pressures. If Hunter had Severe PH, his systolic pressure in the right side of his heart would match the systolic pressure in his blood pressure reading (87). In May, Hunter's systolic pressure was almost 50. Today, Hunter's systolic pressure was 21. Therefore, he was 6 points away from being considered normal. So, this is great news and as he grows, his lungs will grow and the diseased lung with be replaced with healthy lung. This will result in the blood moving freely from the right side of the heart into the lungs where he will outgrow the PH and his lung condition. They believe this is happening. They're going to try to have him outgrow his medication. This will be over a 6 month period. They hope that 6 months will give us better results. The cardiologist gave the approval for Hunter to be taken off oxygen once Pulmonary agrees. Pulmonary was waiting for Cardiology. Cardiology has also reduced Hunter's restrictions on oxygen. We HAD to keep Hunter's saturation above 96 percent at all times because of his Pulmonary Hypertension. Oxygen helps to relax the blood vessels. This makes it easier for blood to flow. Cardiology believes that the Viagra is enough and oxygen is not needed. Cardiology said that if Hunter stays above 92%, they will be happy. I'm thinking that Hunter will be off oxygen soon! Hunter ALWAYS stays above 92%. I'm so thankful that Viagra works for Hunter. They're many babies and preemies that it doesn't work for and PH is fatal for them. It was a chance that I took and it worked! Oh, Hunter gained 3 pounds since May. You should see his chubby little legs. Oh my gosh! They are adorable. He was 21 pounds 6 ounces today. He has come a long way from his lowest weight ever of 1 pound 3 ounces.

Friday, June 5, 2009

Hunter has been doing well since his surgery to correct the g-tube malfunction. He was back to himself within hours after the surgery. He didn't have a fever. And, he wasn't crying out in pain.



Hunter got his mic-key button (g-tube) today. This makes things a lot easier. Although, my dream is that one day he will eat. We continue to work on his oral aversion every day.

Hunter's feeding problems has been his biggest obstacle, aside from his lungs. His lungs are improving. Yet, Hunter’s eating is not improving. We will continue to work with him. But, it is so frustrating.

Saturday, May 23, 2009

We brought Hunter home yesterday. But, had to turn back around. They did rule Hunter as having a viral infection. The pain was still a mystery until we got home. We noticed that his pajamas was soaked and had stomach acid all over them and him. His G-Tube had busted apart in his stomach. He had to have emergency surgery last night at 2:30 AM to repair. His surgery went fine and he is recovering. They said that he might be released today. But, the details are still sketchy. During the surgery, they took a scope down into his stomach. They saw that his stomach was highly inflamed from the G-Tube malfunction. So, he might have to be in the hospital for a day or two longer. They have to make sure that he can tolerate his feeds through his G-Tube. On the good side, he woke up this morning with no fever. And, we are hoping he will be breaking that soon. The inflammation of his stomach and the G-Tube breaking apart would've been the cause for all his pain. They said it would hurt a great deal. The poor baby! Thanks for all your prayers and support.

Thursday, May 21, 2009

Hunter got sick really fast yesterday. He was becoming more agitated and was crying out in pain. We brought him here to U of M and spent the night in the ER. He was admitted because they couldn't figure out what was going on. As they started to eliminate things, they were noticing that Hunter's pain was increasing and his neck and back was growing stiff. Meningitis was a red flag for them and they decided to do a spinal tap. They were almost sure it was meningitis. This had me freaked out. Fortunately, the results (cultures) were negative. Now, we are back to square one and still can't figure out what's causing so much pain and fever. I have a viral infection right now. I went to the doctor's because I had a sore throat and was achy! We just had a discussion with the doctor's here at U of M about Hunter. They are now leaning towards him having some silly virus, like me. Because he is a former micro preemie, his viruses may hit him a little harder than the normal person. So, they are going to continue to observe him and treat him for his fever. Thankfully, his influenza and RSV tests have also come back negative. Hopefully, he will be discharged soon. I am sick and tired of hospitals. They are taking really good care of him here though.

Friday, May 1, 2009

Hunter has been showing signs of improvement following his G tube surgery. Yesterday, I really started to notice it. I did not have to give him any Tynelol with Codeine. I can say that watching as your child suffer is one of the worst feelings in the world. Especially, knowing you can't take the pain away.



We still have Hunter on a continous feeding pump. The pump runs 24 hours a day and pumps food into his stomach at a slow rate. We have to set it at a slow rate and build up the amount as Hunter tolerates it. We are working on increasing the amount of formula he gets over a short period of time. This means that by increasing the amount he gets, he wouldn't need the pump so much. He would need the pump at night when he sleeps. And, 1 hour times 4 times a day. After he can tolerate that, we can start our old method of feeding him. This means that he would be on the pump at night. During the day, he could be gravity fed which only takes about 20 minutes. I know this is so confusing. But, we got it! That's what counts, right?

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.

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.

Tuesday, February 10, 2009

Hunter had an appointment with the cardiologist today. He was scheduled for another echo on his heart and EKG. From my updates in the past, Hunter had a heart condition called Pulmonary Hypertension. If anyone googled Pulmonary Hypertension, they would have read the same things that the doctor told me in September when he was diagnosed. Pulmonary Hypertension is a serious condition in the heart. Its a condition that could be fatal.

In September, they told me that not only does Hunter need oxygen for his chronic lung disease (BPD), but also for his Pulmonary Hypertension. They told me that Pulmonary Hypertension changed everything for Hunter. This is when they broke it to me that Hunter wouldn't come off oxygen anytime soon. I was also told that Pulmonary Hypertension does not go away, it is just a managed condition of the heart. (Remember I said this...because I'm getting to my point) They told me that if his lungs resolved itself, Hunter would probably need to be on oxygen for a couple years because of his heart. Hunter had a recheck in October. His echo looked good. The doctors were more reassuring in October that a couple years might be an exaggerated estimate.

We'll his appointment was today. I think we are witnessing another miracle. Remember, the whole "managed condition". His echo was better than that. There is no trace of Pulmonary Hypertension whatsoever in Hunter's echo. The doctor withdrew his diagnosis of Pulmonary Hypertension. The new diagnosis is: Hunter's heart is healthy. This is wonderful news. The doctors are beginning the process of weening him off of Viagra. They did not adjust his dosage and will wait for him to outgrow the dose he's on. This shouldn't take long. He is halfway there. In addition, the cardiologist gave the "okay" for Hunter to come off oxygen - but he still needs the approval through his pulmonary (lung) doctors. It's not going to be long folks. Hunter can hold his oxygen stats up. The one thing that held pulmonary back from doing the sleep studies and oxygen tests was his need for oxygen due to the Pulmonary Hypertension. Gosh, what a miracle!

Hunter's Pulmonary appointment is next Tuesday. I can't wait to discuss the next steps with them

Sunday, February 1, 2009

Hunter was discharged from the hospital after observation.

All the cultures came back negative. He did not have an infection. They believe he caught some sort of virus, which spiked his temperature and resulted in seizures.
They will not be treating him for seizures. They don't believe it will be an ongoing problem.