Monday, November 24, 2008

Hunter is weighing in at 12 pounds 13 ounces and he is solid.

He had his lung appointment today. His lungs are doing a lot better. I was hoping to be oxygen free by Christmas. Although, the lung doctor feels that his lungs are doing better. The oxygen is also helping Hunter's heart condition. Hunter's next appointment with the cardiologist isn't until February. If the heart doctor feels that his heart condition has improved enough to be off oxygen, the lungs will not hold him up anymore.

The cardiologist already felt that his heart condition, Pulmonary Hypertension, is secondary to his Chronic Lung Disease. Hopefully, since his lung disease is doing better – so will his heart. I have already noticed that his heart rate isn’t so high. In addition, his blood pressure has been doing better. These were all clues that he was having a problem with his heart to begin with.

I am so excited for the holidays this year. I just bought him the cutest Santa outfit for Christmas.

As always, I continue to pray for him. I can’t thank you all enough for all your prayers and support.

With or without the oxygen, he is still my Christmas miracle baby.

Hunter rolls...

Hunter ROLLED OVER for the first time today. It happened around 12:40 PM. He was playing on the floor. I was in the shower. Daddy was eating something for lunch. Dad looked down and saw that Hunter was lying on his belly. We both missed the "actual" roll. But, he did it!!!

Tuesday, November 4, 2008

We'll lets see...

As we were placing Hunter's feeding tube in place, we removed the nasal cannula from his nose. Therefore, Hunter was not receiving oxygen. Hunters oxygen saturation stayed at 98 % for 15 minutes. This is so awesome!



Some challenges ahead for Hunter is his feeding tube and getting that removed. Hunter is still having a problem with taking in his entire feed. He gets so exhausted and falls asleep before he can finish. This is why the feeding tube is still in place. His inability to finish his full feeds is due to his lungs and the work it takes to take food from a bottle.

Hunter is working with an Occupational Therapist at U of M. We have taken his feeding times to every four hours and slowly feeding him a large bolus at night over an eight hour period.

His Pulmonologist called today. They are switching his formula from Neosure 22 cal to Elecare 22 cal. This is easier on the digestive system. In a couple weeks, they will try Elecare at 24 calorie to see if he can tolerate this.

Hunter's First Halloween

Hunter was dressed as a fireman for his First Halloween. His delicate health forced him to remain inside, but he did a wonderful job handing out candy.






Hunter's First Halloween Pictures:

Thursday, October 30, 2008

Hunter had his appointment with the lung doctor today.

We got good news. Hunter was able to have his oxygen weaned from 1 liter down to .5 liter. Today's appointment consisted of medicine management and making sure he has the right dosage since my little man is growing so quickly.

There goal with medicine management is keeping the inflammation off of his lungs to keep them growing healthy and having Hunter breathe easier.

Hunter suffers with reflux. So, they increased the dosage on his Zantac. They also increased the dosage on his puffer. It is a medication called Flovent. It decreases the inflammation in his lungs. Both of his diuretics remained the same.

She definitely thinks that his lungs are growing. We hope and pray that one day soon he can come off the oxygen entirely.

Friday, October 24, 2008

It is the best feeling to walk out of the hospital and be able to look down at the stroller and see my son there. It is the best feeling to drive home, look in my rear view and see him sitting there.

Hunter has been doing really well since he has been home. He might need Tylenol here and there. But, he has handled the surgery like a champ.

I can't wait until one day I can tell him and he can understand just how proud of him we are. He has endured so much. Yet, he still finds the time to be a content, little baby with such a big future.

I can't thank God enough for our little miracle.

Wednesday, October 22, 2008

Hunter did really well overnight with no events to list.

He is being discharged today. Yay!

Tuesday, October 21, 2008

Hunter had his surgery today. The surgery went well with no complications. They thought they were going to have a tough time getting him off the vent.

After the surgery, the surgeon met with us and he explained that they were having difficulties getting Hunter off the vent. We weren't able to see him at this time. We would have to wait.

About 20 minutes later, the told us that it was time to see Hunter. I was preparing myself to see him on the vent...again. It is so difficult to see him there.

When we walked back to the recovery room, Hunter was on nasal cannula, off the vent and doing really well.

They admitted him for overnight observation. If there are no complications, he will go home tomorrow

Tuesday, October 14, 2008

Let's start with the good news first. I mentioned that at Hunter's last hospitalization they found a heart condition called Pulmonary Hypertension. This can be a pretty serious condition of the heart, but thankfully they caught it and began to treat it. They prescribed viagra to him, originally a heart medication until some old guy found out it had benefits. They also increased his oxygen from .25 liter to 1 liter. (basic mathematics) The oxygen along with the viagra was the course of treatment for his heart condition. Last month the plan was to wait a month and see if there is an improvement. Hunter had a cardiologist appointment today. They did an echocardiogram. Guess what...big improvement! A month ago, Hunter's right side of his heart was greater than his left side. Hunter's right side is now lessor than his left side. They are not doing the cardiac catherization. They even talked about weening his oxygen to .5 liter. This is pending Hunter's pulmonary doctor's opinion. They think that his pulmonary hypertension is secondary to his chronic lung disease. This means that as his lungs are getting better, so will his heart. Yay! We aren't getting cocky yet though. Of course, they aren't sure that it is secondary to his BPD (chronic lung) yet. They are very optimistic. The cardiologist doesn't want to see Hunter back for four months.


Actually, I have double whammy of good news. The second part of my good news is that Hunter saw his pediatrician the other day. He said that it sounds like Hunter is moving air better threw his lungs. Hunter knocked his nasal cannula out of his nose the other night. His monitor sounds whenever his oxygen level falls below 94. They have to be strict about his oxygen level because of his Pulmonary Hypertension. In the past, when Hunter knocked his nasal cannula out of his nose, his oxygen level would fall fast and dramatically. It wasn't odd to say that he would quickly get to 70/60 and be blue. The other night, Hunter's monitor was beeping so I went into his room. I found his nasal cannula above his nose. But, his oxygen level was staying at 91 with no oxygen. I sat there and watched it for a minute. It remained at 91, then slowly dropped to 88, climbed back up to 91 (without the oxygen in his nose) but hovered between 88-91. I put the nasal cannula in after a couple minutes because his monitor was driving me crazy. But, hopefully that is a sign that his lungs are growing healthier.

Sunday, October 12, 2008

We had a scary last couple days.

Hunter had to get blood work done, which included a basic electrolyte check. His potassium came back high. The doctor called to tell me that having high potassium was dangerous, but I shouldn't worry about it. This was not his normal pediatrician.

I didn't settle with that answer and called the cardiologist. She ordered a repeat test ordered. Apparently, the way they do the blood draw can throw off the results. If they have a hard time, it can make the potassium look higher than what it actually is.

They did a repeat test and Hunter's potassium is on the high range of normal but it will not require a change in medications. They will monitor him.

Hunter seems to be doing well. God is watching over him.

October 5, 2008

Photo and video editing at www.OneTrueMedia.com

Tuesday, September 30, 2008

All is still quiet and mellow this way. We have noticed that Hunter has been doing a couple things that get us parents a little excited.

First, he is reaching for things to swat at them - such as toys that dangle in front of his face or musical stuff.

Second, he seems to be holding his head up a lot better.

Third, he is smiling more and more responsive to our voices.

Early on, which is his physical therapy came out today. They are pretty pleased. Developmentally, he is right where he needs to be.

Thursday, September 25, 2008

Hunter is still doing well in his crib at night. He is right at home. But, we have to turn on a fan and face it away from him for the noise. He got so used to the white noise of hospitals. He needs something to block the silence.

They tried to increase his calories to a 24 calorie diet. That didn't work to well for Hunter. He did not tolerate the 24 calorie and we had to go back down to the 22 calorie. Hunter's little kidneys can't process all the fluid that he should be taking. The goal was to reduce the volume of feeds and increase the calories. Since that didn't work, we have to go to plan B. We are back down to 22 calorie on low volume and working our way up. His weight is staying stable.

Other than that, things are pretty mellow and I like for it to stay that way. Tomorrow is my b-day. I have everything I could ever want. I have a beautiful family and my son is home with me.



Thank you to all that made this dream possible for me. Having Hunter home with me is the best present you could've ever given me. A million thank you's could never justify how grateful I am to all the neonatalogists, doctors, nurses, and RT's that made this possible.

Hunter said his first words today. Haha...I'm not sure about that but it sure did sound like he said Uh-Oh. He was making noises. Tim and me were talking to him. All of a sudden, "UH-OH" comes out. It was so cute.

He was also playing on his gym. He almost completely rolled over. He didn't quite make it, but did a really good job at trying. Go Hunter!

I updated Hunter's photos here. Please take a minute to look at him. He keeps growing

Thursday, September 18, 2008

Hunter slept in his crib for the first time last night. Yay! He would not sleep in his crib before now. He would cry and cry. We had a pack and play beside our bed because he threw a fit to be by himself. Last night, he was so content and I thought I would give it a whirl. He did it!

Tuesday, September 16, 2008

Hunter came home today.

He is so content. I love having him home and having him happy!!!

Hunter sits in the Stanley Cup

I am just walking in the door from another long day at U of M.

First off, I like to start with exciting news....Hunter got to meet Chris Draper and sit in the Stanley Cup. That was pretty cool being the Red Wing fanatic that I am...I mean that Hunter is....:-)



Hunter had his second echocardiogram today. He also had an EKG of his heart. The echo didn't show much improvement, but there was a slight improvement from the viagra. I thought he was going to have to stay for awhile. But, the cardiologist discussed his care plan. HE IS BEING DISCHARGED TOMORROW!!! YAY!!! Hunter had to be followed by an expert in Pulmonary Hypertension. His appointment will be in a month from now. They will reassess his heart and see if they need to take more measures to treat him for the Pulmonary Hypertension. They are hoping that with a month of growth and lung development it will make a huge difference with the Pulmonary Hypertension and the pressures on his heart.

If, after a month, he is rechecked and his condition doesn't change they will have to do a cardiac catherization. This procedure requires them to go into his arteries to get an accurate read of the pressures in his heart and lung. He will have to be put to sleep and on a vent for this procedure. This will also determine if they need to add more medication to treat his condition. I will be praying he continues to grow, develop, and outgrow it.

From a lung perspective, they will be following Hunter in the BPD clinic. BPD is the same thing as Chronic Lung Disease. BPD stands for Bronchopulmonary Dysplasia. It's all associated with his extreme prematurity.

Hunter's oxygen needs have to be increased. He needs oxygen for his BPD and Pulmonary Hypertension. But, they don't foresee this lasting longer than one year, possibly less. Again, a crystal ball would really come in handy to answer ALOT of my questions...

Thanks for your prayers.

Sunday, September 14, 2008

I am still here and never had the nervous breakdown that I still think I deserve. :-) No really, I'm okay and was nowhere near a nervous breakdown. Like I said, that would've happened 100 days ago. And, I'm not giving up this fight with Hunter. He has taught me a thing or two about true inner strength. My house is a mess, my laundry is stacked up, and for those that know me the best - you do not believe it. But, yes - everything is just out of order right now. It is awful... Although, it is driving me NUTS! It can wait.

Anyways, moving forward...OH, we are switching our lung doctor and cardiologist team over to U of M. It was a really hard decision to make. After we found out that Hunter had Pulmonary Hypertension, we wanted the lung and heart doctors to be able to work together easier. We love St. Joe's and U of M cannot replace them. Hunter is getting really good care at U of M right now and we found a cardiologist that specializes in Pulmonary Hypertension. Hunter has to be followed up in a developmental clinic because of his prematurity. This is different than his lung and heart doctors. I was pretty firm with U of M that we were going to stay at St. Joe's for the developmental clinic. One of the neonatalogist that saved Hunter's life in the beginning is head of that. I love all of the neonatalogist and would not feel comfortable removing Hunter from the developmental clinic at St. Joe's. St. Joe's still remains a family to me.

We talked to Hunter's lung doctor. We thought he was going to come home today. Then, his heart doctor came in and had a different view. We will have to stay for a couple more days, at the least. They have increased the viagra to a max dosage for Hunter. They did this a couple days ago. They want to repeat his echocardiogram on Monday. Our hopes are that the pressure on the right side of his heart has come down. If that is the case, we can come home. If not, Hunter has to stay. If they send Hunter home with high pressures in the heart, Hunter WILL have heart failure. It would be a matter of time. Although, I want my baby home, I do not want him to have heart failure. I am pretty comfortable with their decision and will stay as long as we need to get him right. If Hunter's pressures have not come down, he will need a cardio catherization down. It sounds like it is a pretty serious procedure. They will have to put him to sleep for the procedure. They go inside and look at how intense the pressure is. They are also looking to see if it is a premature lung structural problem, or a premature blood vessel problem. If it is a premature blood vessel problem, they can add another medication to the viagra to help him. If it is a premature lung structure problem, the treatment is a little more intense. The doctor wasn't going to go there with me yesterday on that. It is one day at a time. We have to get through the echo on Monday...

We bought Hunter his third mobile for this hospital stay. His first mobile, (Dalmatians), stay in his "fire truck" nursery. The second looney toon one - I can't find. Now, he has an adorable rainforest one on his crib. He loves it. I even named all the little animals on it. The gangs all there with him: George (the "curious" money), Kermit (the frog), Sam (the toucan), and Benson (the bubble bee). Maybe, I'm losing my mind ... a little. Hahaha. Insanity can be fun!

So, please pray that Hunter's echo looks good on Monday, the increased dosage of viagra is working, and he can come home. If not, he is there for awhile...at least they are being thorough and not kicking him out the door. Heart failure would be devastating

Friday, September 12, 2008

Today has been a stressful day. Hunter was moved to a different room. He is still on the 6th floor. He is in room 6684. The day started with a family that moved into the room we were in. Apparently every adult in that room was a smoker. The whole entire room was immediately filled up with the smell of smoke. This happened once the adults entered the room. It almost made me gag. And, I'm an ex-smoker. That's how bad it was. Hmmm...let's think about this. My baby came in here for respiratory failure and chronic lung disease. I just couldn't let this go. He's my baby and if I don't stand up for him, no one will. So, I was pretty adamant that we needed to move to a different room. This is how we ended up in this room.

Stressor #2: Hunter's respiratory rate was running higher than normal. His lips were quivering and his arms were shaking. I had to wait an hour or two of wondering what the heck was going on. I was anxious! One and a half hours took forever. They finally think that it is a medication withdraw he received in the PICU. They had to start him back on ativan and have to slowly wean him from that. This is something I thought they did in the PICU. Hmmmm?????...not sure what's going on at this point.

Stressor #3: He has been ordered echocardiograms and ultrasound. We found something that looked like a hernia in his scrotum. This requires an ultrasound to take a look. Echocardiogram -They are still concerned about how hard the heart is working to pump blood through the blood vessels of the lungs. They may have to tweak his dosage.

Stressor #4: Did I mention that I watched as a respiratory therapist wipe his snotty nose on his hand, up his arm; then, reached for my son to give him a breathing treatment. Yep, my son - the one with chronic lung disease that is highly susceptible to viral infections that could put him right back into the PICU with respiratory failure again. I was pretty sarcastic. Funny, a different RT has been working on Hunter since then.

Everything that Hunter should not be exposed to - it has happened on this floor and I am hot! Smokers and snotty noses, I'm not even going to ask..what else? Plus, I'm exhausted. That probably has an impact on my coping methods at this point. Honestly, I'm not having a nervous breakdown. I think if that was going to happen, it would have happened 100 days ago...Hunter and me...we are fighting this together. He's not giving up and neither am I.

Friday, September 12, 2008

Hunter got the official diagnosis today of Pulmonary Hypertension secondary to his Chronic Lung Disease.

A brief explanation of Pulmonary Hypertension is the blood vessels in the lungs clamp shut. This makes the heart work harder.

Hunter's echocardiogram results were that in the heart, the right ventricle was larger than the left. This is bad because the right ventricle is in not supposed to work harder than the left. The right is supposed to be a little more relaxed. Therefore, it gives us the sure diagnosis of Pulmonary Hypertension.

They increased the viagra that Hunter takes for his Pulmonary Hypertension. This was increased yesterday. This is supposed to relax the blood vessels in the lungs so the heart can pump easier. One of two things could happen: 1. The viagra works, they keep him on it and in a year or so when his lungs are better they reassess the situation to see if he still needs it. 2. It doesn't work where they would have to take much scarier measures. This might include Hunter having another stay in the hospital, placing an long term IV (PICC) in his arm and starting him on medication that could only be put through the IV. He would eventually have to come home with an IV.

I am really praying that that the viagra starts doing its job. Hunter's home oxygen will have to be increased to 1 liter, instead of the 1/4 liter. Oxygen has also been proven to help Pulmonary Hypertension. The big hopes are that once Hunter's lungs are bigger and stronger, he will outgrow Pulmonary Hypertension as well as Chronic Lung. It is a serious condition that if left untreated could be fatal. Thankfully, we found it.

Things are constantly changing. They know that he has Pulmonary Hypertension. This is the reason he became so critical so fast. They call it Pulmonary Hypertension crisis. This is the official findings for this hospital stay and the reason he was so critical.

Thursday, September 11, 2008

We are out of the PICU and on a normal care floor. Yay! Hunter is doing great. He is back to his normal awesome self. His voice is a little hoarse from the vent, but that will go away. The vent leaves everyone with a sore throat. I had a sore throat when they had to intubate/extubate me for my surgery.

If you plan on visiting Hunter, he is on the 6th Floor of Mott. He is in Room F6527. If you take Mott's west elevators, it is closer than taking the east. His room is right outside the big family room and nurses station.

We will be here for a minimum of 3-5 more days. They plan on doing a multi channel test to see how severe Hunter's reflux is. They had to take him off the Zantac and wait a couple of days to do this test.

Things are really start to smooth out with Hunter and he is doing so well. He was so swollen before. Now, he looks like my little baby again...acting like him too. :-)

Thanks for the prayers and support.

Wednesday, September 10, 2008

Hunter was turned down to his 1/4 liter oxygen last night. This is where he was at while at home. His respiratory rate and oxygen is great. If he keeps it up throughout the day, they will be moving him out of ICU and on to the floor

Tuesday, September 9, 2008

Bragging Rights....This goes down as Hunter's fifth time of self extubating. haha. They were supposed to extubate him at noon. Hunter heard this information. The nurse, Hunter, and me were sitting in the room at 12:15 waiting for the doctor's final okay ... well, what came next...Hunter turned his head and pulled the vent out. He only gave them 15 minutes and he took actions into his own hands. So far, things are going good. They started him out at 1 liter and have been able to wean him down to 1/2 liter. Next step ... 1/4 liter, this is where he was at before. I am so excited. He looks so good. He is bright eyed and is being my little bubba again! Yay!!! Keep praying. It usually takes a good 24 hours on nasal cannula to call him safe. But, he is stating nicely right now. I'm all smiles right now, as you can imagine.

Tuesday, September 9, 2008

Things keep changing here and with Hunter. They put Hunter on Viagra. I got raised eyebrows on that one. Yes, it is true. Initially, Viagra was/is a medication that treats pulmonary hypertension. It got its reputation because it has some "rewarding" side effects. After the side effects were made known, they started to market Viagra for "pleasure" rather than pulmonary hypertension.

They are treating Hunter for Pulmonary Hypertension. They believe that his blood is shunting through his lungs and causes his destats. As we all know and I have wrote over and over again, Hunter had Chronic Lung Disease (BPD). BPD will get better as he gets bigger and hopefully will his Pulmonary Hypertension.

They started Hunter on two different diuretics. They did this because fluid builds up on the lungs of these micro preemies. Again, it's a BPD thing. The diuretics will keep him breathing easier by removing the fluid from his lungs, even when he comes home. I am looking forward to how the three different medications will help him.

I haven't made it up there yet. When I called, the air in the PICU today is light and suggests that Hunter will be extubated today (off the vent). They have not made rounds yet. He had a good night, has done good with his sprints, and his blood gas was great this morning. Hopefully, it is safe to say that my son is out of "respiratory failure" status and on his way up. I think I heard the doctor say "we are out of the woods". But, I can't be sure. We are still going to be at the hospital for awhile. They want to make sure that when he extubates he is stable. They will have to wean his cannula air pressure down to 1/4 liter, make sure he is stable there, and they have tests and sleep studies they want to do before he comes home.

I have to remind myself that there is no such thing as a crystal ball. Majority of my questions revolve around that damn crystal ball theory. The doctor "predicts" that he will still need to be in the PICU for a couple days. He will then be transferred to the floor and be monitored by a specialist. We have to stay on the floor for a couple weeks. Ugh! Hopefully, we can make it out by 9/26 xxx crossing my fingers xxx

As most of you know, I'm an only child - but to my Sisters (you know who you are), my FRIENDS, and family - THANK YOU. I lay in bed last night thinking about myself and how tired I was (emotionally and physically) and thought shame on me. I feel worn out. What about Hunter? The poor guy has had breathing tubes stuffed down his throat how many times, people poking him, IV's, PICC lines, blood pressure cuffs, constant monitoring with patches he is allergic too, wires and tubes everywhere, different medications, difficulty breathing, awful eye exams, just messed with from head to toe for five months. I thought how unnatural this is. But, He lays there and continues to fight. What a trooper he is. Once again, he amazes me. I don't know how he has done it. I just can't wait for him to get better and stronger. It kills me to see him go through so much.

Thanks for your prayers and support!

Sunday, September 7, 2008

As it stands right now, the vent settings are as low as they can be without extubating him. Hopefully, if nothing changes, they are going to try sprints tonight. I know, I know..what the hell am I talking about? They are going to make him get up and sprint up and down the hall to see how well his lungs can handle the exercise. Okay, I'm not funny whatsoever. But, it was worth a try. Sprints are when they keep him intubated, but Hunter has to initiate his own breath. It gives the medical team a good idea how he will do when they extubate him. It could be as early as tomorrow. We will know more after Hunter does his sprints! He hates the vent and fights against it. Don't ask me how he fights against it? He's pretty smart and found a way. Please pray that Hunter's respiratory system is better and he is able to initiate his own breathing again so they can extubate him.

Although they are talking about extubating him, we will still be here for awhile. It all depends on Hunter and how fast he can get back to the nasal cannula 1/4 liter. Hopefully, we will be home by my birthday (9/26) All I want for my b-day is him home with me, cuddling him all day long

Saturday, September 6, 2008

Hunter seems to be doing better. Despite him still being heavily sedated and on a vent...a mother knows.

He is not destating so badly and they have been able to wean his settings on the vent.