Hunter's First Christmas

Hunter had his first Christmas today. We got a white Christmas like we hoped for.

I think he is still trying to figure out where all the presents came from and what the commotion is all about. He'll get it.

He got a toy box, and some toys that make music and light up.

Grandpa bought him a seat that he can sit in and play.

It was a nice Christmas!

Hunter's First Christmas Photos:

Friday, December 12, 2008

Hunter had a breakthrough today...

He ate this first Rice Cereal meal and did AWESOME! We were only suppose to feed him a teaspoon because that's all they thought he would take. A half of a bowl later - he was full. Hunter fools them again. Ha



We are trying something new. We are still trying to get him off the feeding tube. His occupational therapist believes that he still has his feeding tube, not because he can't do but because he developed certain behaviors.

Taking food from a bottle is a lot of work. Why work so hard if you know it will be fed through the tube. She wanted us to try Rice Cereal. Oh my gosh, what a little piggie. He loved it.

Photo and video editing at www.OneTrueMedia.com

We called his Pediatrician who told us to continue with the Rice Cereal. We might just have to accept that he was not good with a bottle and move forward. Hopefully, this is the answer to get him off the feeding tube.

Yeppie for Hunter!!!

Monday, December 8, 2008

I took Hunter to his Pediatrician the other day. He noticed that Hunter's eye were jerking a little. He asked me when his next appointment was and I told him January. He said that would be okay.

It wasn't sitting easy with me. After all we have been through, I wanted Hunter to see his eye doctor. I scheduled an appointment and we went today.

We got some bad news. Hunter is severely near sighted. He will need glasses before he is one years old. She was hoping that Hunter could wait until he was older. But, that is not an option. His vision will progressively get worse throughout his life. The risk of him going blind is minimal. They will be keeping a close eye on him throughout life.

We are going to wait until he doesn't need oxygen anymore, and we will be putting him in glasses. The doctor said she can have him in contacts by grade school.

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.

Saturday, September 6, 2008

Hunter is still on the vent, but is waking up more. They have been able to wean the settings on the vent. They have not been able to wean the sedation yet. This is scary because the sedation doesn't seem to bother him too much. Perhaps, tolerant? It's nice to see his big brown eyes looking around. He isn't so puffy anymore and is looking more and more like Hunter. His destats aren't so frequent, but they still happen. When they happen, they aren't as severe as before.

Our hopes is that Hunter will come off the vent next week sometime. After he comes off the vent, he will still be in the hospital for awhile. They need to wean his oxygen flow back down to a 1/4 liter oxygen. It will be nice to see that vent gone, gone, gone away!

They are thinking that some odd virus caused this with Hunter. As I wrote a long time ago, the tiniest bug - may not affect you or me - will set him over the edge. So, we know that when Hunter gets sick, it sends him into respiratory failure. That is really scary to think about. The winter is right around the corner. I ramble when I'm tired. Here I go rambling...

Friday, September 5, 2008

As you all know, Hunter just spent 119 days in the NICU. My strength and energy was spent when he was discharged from the hospital. It was 119 days of worry, frustration, and scary times. It was putting my whole faith in God and knowing that he would pull us through it. It was knowing that my system could not handle one more day in the hospital.

On July 28th, Hunter came home. What a beautiful day that was. Although, I was never really able to take a good, deep breath, he was home with me. I got to cuddle him, care for him, and love him 24 hours a day. I didn't have to leave him at night. I didn't have to spend my nights worrying what was happening with him. All I had to do was check on him to see him peacefully sleeping.

I had one month of bliss with my son. His chronic lung issues make him a delicate infant. I had to watch him closely. I did everything right or so I thought. I didn't take him into stores and around a lot of people. I washed my hands constantly. I sterilized everything. He remained on that teeter tater and nothing could be unbalanced.

On August 31st, Hunter was rushed to the hospital with respiratory distress. We had to call 911 because Hunter was blue. Initially, it was respiratory distress but quickly turned to respiratory failure. Now, heavily sedated, back on the vent, my baby lies there paralyzed from the medication. He is back in intensive care, but not around the nurses and doctors I trust so much at St. Joes. He had to be transferred to the University of Michigan PICU. Hunter's condition was too serious for St. Joe's. Hunter can't be admitted back in the NICU. St. Joe's does not have a PICU. Not only is he in critical condition, I have to learn to trust a whole group of people that aren't the people I grown to love and trust from before. It's not the same group of people that had a heart for Hunter. The NICU loved and worked so hard for Hunter. He was engrained in there hearts and still is. Hunter wasn't a job to the nurses, doctor's, and respiratory therapist. He was a part of them. He was a piece of there heart. Because of that, I knew he was in good hands. They cared about him. No other hospital. No other intensive care unit could have that same bond with him. No other place was there from the beginning. No other hospital could replace St. Joes. I walked in to so much support from them. I know they love Hunter. Not only do the nurses, doctors, and RT's deserve the credit...No other Chaplain could be Jean. And, no other social worker can I trust but Margy and Lily. How can I move past this? The answer is: I can't. No one can replace the care Hunter and our entire family got at St. Joe's. I can't have Sharon, the crazy respiratory therapist, who in all aspects is not crazy at all - but very intelligent and taught me so much about life through her own experiences. Or, Becky - gosh, what can I say about Becky? The best nurse I ever met, perhaps. Or, Dr. Weiner...the doctor I looked up at when I was in labor and being wheeled into the c-section room pleading with him to save my baby. And, saving my baby ... he did. But, it isn't just the three people I mentioned. It is the entire team - who I could write a novel about - all good things - about how each one of them loved Hunter, loved our family. It really wasn't a job to them. It was more. We were there family. No other hospital could replace that.

So, here I am wondering...where will I find the strength to get through this, specially without my family of doctors, nurses, RTs, social workers, and chaplains? I had to put away his pictures of his critical days before this happened. I couldn't look at them. Now, we are thrushed back into the situation we fought so hard for in the beginning.


I set here and right this blog. Why? I am trying to figure out how I am going to get through another day. How am I going to drive to the hospital? How am I going to park? How am I going to sit there and wonder what the future holds for my son? The fear of losing a child is to intense for me to write about, but that intensity I live with everyday. In the meantime, I listen to the hum of the ventilator as it is engrained into my memory, traumatizes every thing I see and hear. Where do I find the strength to go through this?

Where do I find the strength to make sense of this all? The doctors can't find a reason why it happened. So, I put the blame on me. I was the one taking care of him.

I pray ... God give me strength. This body is worn. This mind is worn. This soul is worn. I love my child more than I love anything in this world. I love my child and put my child before anything, including me. Why him? Take me...

Please pray for Hunter once again. He needs your prayers.

Wednesday, September 3, 2008

Pulmonary Hypertension with respiratory failure is what they're calling it.

Respiratory failure is exactly what it sounds like. It is when your respiratory system fails to work.

It can be reversible. And, that is the ray of hope I grab on too. It can also not be.

He has made little improvements today, which gives me an additional ray or two. He was on a machine that delivers nitrous oxide to him. Nitrous oxide opens up his airways and allows the blood to move more freely through his lungs. When he first arrived to the PICU, they had the machine set at a level of 10. They tried to wean him to 5 yesterday. That did not work. Today, he is down to 1 and still weaning....

They haven't been able to wean him from the vent today. When he arrived in the PICU, he had the highest vent settings and the oscillator was the next step. He is down to modest settings, which occurred yesterday. He has remained there. Since they are weaning the nitrous oxide, they don’t want to touch the vent settings. Hunter doesn’t like a lot of changes all at one time. Patience can be the key.

They did a spinal tap on him today. The preliminary results are negative for meningitis. It is something they had to rule out. Viral infection has been negative. Bacterial infection has been negative. They are not sure what sent him in this downward spiral.

It's official. Hunter was not having seizures. They're not sure what caused his seizure like activity. The results are negative and his cat scan shows a normal brain with nothing remarkable to report. They will be following up with a MRI. This will come later.

Before Hunter went into the hospital, we thought he was having trouble with reflux. This is very common for a micro preemie. Before Hunter leaves, they will be doing a sleep study on him to figure out the severity of his reflux. They need to be able to treat it accordingly. Reflux can lead to pneumonia in these little guys.

I think I covered all my bases on Hunter for the time being. I am tuckered out. My b-day is at the end of the month. Let's pray he is out by then...All I want to do is spend my b-day cuddling him.

Wednesday, September 3, 2008

Hunter's pediatrician came to visit last night. He read the notes and sat down with me to have a talk.

The biggest question is : what is causing all of this? We need to know how to fix it.

Virus Tests : Negative
Bacterial Test : Negative

I got a name...pulmonary hypertension. Pulmonary hypertension is when there is too much pressure in one lung and not enough in the other. Because Hunter's lungs are so premature, the heart has to work harder to pump blood to his lungs. Therefore, fluids starts to build up in his lungs, as does the pressure. This creates a critical situation for Hunter. Pulmonary hypertension can happen at anytime. The pediatrician referred to his situation as walking along the edge of a cliff. When pulmonary hypertension happens, it is that step off the cliff.

Hunter is remaining the same. He might have made a slight improvement, but last night started to have difficulty maintaining his blood pressure again. We are praying that today is better! He is still a very sick little baby.

Thank you for your prayers...

Tuesday, September 2, 2008

Hunter is still in the PICU at U of M. He may be there for awhile.



Yesterday, his airways clamped shut and it appeared that he had a seizure. We are still waiting on the results from neurology who was monitoring him at the time. Hunter has never had problems with seizures. So, the whole episode was scary as well as his airways clamping shut. When your airways clamp shut, it clamps shut on the ventilator as well. This means that no air can get down him. They had to quickly give him a muscle relaxer and so forth..I had to step out of the room at this point. So, I can't tell you the whole story.

He is not putting out good urine output, his body is swelling, he is on the highest settings that the ventilator has, next step oscillator, and they are having difficulty with his blood pressure...ugh!

At this point, no one knows what is making him this sick. The situation is not good. He is not good. I am devastated, as you can imagine.

Here I go with how I am doing...I am holding up, but that is all I can say I'm doing. I am back to being a robot. Last night, was really hard to leave him. I came home and felt the need to be by him. So, I grabbed my pillow and blanket, the last blanket Hunter was using before he left for the hospital, slept in his nursery, crying myself to sleep.

The last couple days have been extremely rough. They have him completely out and paralyzed. I miss my lil man. I miss him and his cute reactions when he hears my voice. I even miss his cry. This is so hard. I can't even begin to explain.

I have to take my shower so I can head up there.

Sunday, August 31, 2008

It wasn't long. Hunter had to be admitted into the hospital. This stay is a more severe than the previous stay.

Hunter was having problems with reflux last week. He appeared very uncomfortable. The doctor called him in medicine and I was hoping that would start helping him. Hunter's behavior and work of breathing gradually got worse.

I continued to watch him over the course of two days. Yesterday, I made the decision. We couldn't wait any longer. He was a nasty color in his face and we had to keep cranking up his oxygen to keep his color.

After we got him in the car and drove away, Tim noticed that despite Hunter being on significantly higher oxygen settings, he was still turning blue. We knew that we could not make it to St. Joe's. We pulled into Dundee Fire Department and called 911. Hunter was transported to St. Joe's.

After arriving at St. Joes, he was in worse shape that we could have ever imagined. It was determined that Hunter needed to be in an Intensive Care Unit. They transferred him to U of M.

Once we arrived at U of M, they started there tests, hooked up a vent (sigh), and began working on my little man. He was admitted into the PICU. We have no clear answers why he has taken such a turn for the worse.

In the middle of the night, Hunter started having seizure activity. They brought in the team of neurologist, and have him hooked up to see if it is seizures. I still don't have an answer for this yet either.

Please pray for Hunter.

Friday, August 22, 2008

He is being discharged today. Finally, we will have him home with us. This stay is being chalked up as his bad lungs. He will outgrow his chronic lung disease, but we have to practice patience until then. We pray that Hunter grows stronger everyday. We pray that his lungs are healing and growing. It has been so hard not having him home. I can't wait for his discharge.

Thursday, August 21, 2008

Today has been filled with disappointment and confusion. Hunter was supposed to be discharged today. According to Hunter's chart, it says that his oxygen requirements were turned up to .30 and fluctuated between .30 and .25 yesterday. This confuses me because I sat here all day and not one time did a nurse have to turn it up. Because his chart says that his requirements have fluctuated, the doctor is keeping him here another day. I am a little confused how it fluctuated and was never turned up..I guess the doctors have to go by what his chart says.

Wednesday, August 20, 2008

The doctors have ruled out pneumonia. His hospital stay his due to his chronic lung disease and complications associated with that. We were really hoping to bring him home today. They have discontinued the Lasik’s, steroids, and breathing treatments. He is sitting nicely at .25 liter again. We found out that he was not coming home today, possibly tomorrow.

Tuesday, August 19, 2008

Hunter was admitted into the hospital early this morning. We spent all night in Emergency. Hunter was wheezing. I called my Pediatrician's office who advised me to bring him in. After monitoring him in the ER, they decided it would be in his best interest to admit him.

After they admitted him, the doctor ordered a chest x-ray. They noticed that his lungs were "wet". This means that he had extra fluid on his lungs. They are going to keep him, start Lasik’s to remove the fluid, steroids, and breathing treatments.
Hunter's oxygen requirements went from .25 liters to 1 liter. They will be trying to wean him down over the next couple days.

Wednesday, August 13, 2008

Hunter has been doing well since his discharge. We have taken the time we need to spend time (spoil) with him. We have really come together and enjoyed this time.
I don't have too much to write about. Hunter has a nice nurse that comes to see him every week. She weighed him today. He is 7 pounds 12 1/2 ounces. His discharge weight was 6 pounds 5 ounces, so he has really gained the weight here at home.
Hunter is still being fed by bottle and through his feeding tube. His lungs give him difficulty taking every bottle. The doctors say the premature lungs and feeding issues go together. So, when he comes off oxygen, he should be coming off the feeding tube.


We went to his lung specialist the other day. They had us turn off Hunter's oxygen for 10 minutes. Their objective: to see how long it takes for Hunter's oxygen levels to drop without the oxygen. After 10 minutes, Hunter's oxygen saturation was in the mid 70's. In a perfect world, it should have remained between 96-100%. He is not ready to come off oxygen yet. They passed on scheduling his sleep study this month. He is not ready. We have another appointment in September.


We are continuing to enjoy that Hunter is home with us. We continue to spoil him. He is not sleeping in his crib yet. I think he needs to feel close to us. We have him sleeping in a pack and play next to our bed. We are trying to get him over to his crib. It is a work in progress.

Home Sweet Home, Finally!!

HUNTER IS HOME!!!

We are basking in the overwhelming joy and happiness!

He is doing great. He is laying on Daddy's chest and getting tons of love. He just got done loving on Mommy. It was Daddy's turn. Mommy does have to give him up every now and then to Daddy.

Saying Goodbye (Discharge Photos)

The Eve of Discharge

We are on the eve of discharge. I feel like a kid at Christmas. I can't wait.
Today, we finished up our training with the nurses. We practiced the feeding tube and went over the training that the hospital required before we left.

Hunter is having problems with his blood pressure. The top number is running a little bit high. They are going to try to discharge him tomorrow, but he might need to stay an extra night to monitor this. They did an urine analysis. That came back normal. They are going to monitor it overnight.

I had to say good bye to some of the best nurses and respiratory therapist today. It was hard. They have become family and have given me my dream of having a child. They worked so hard and I can't put into words how much I appreciate them. They are miracle workers!

Discharge approaches

I stayed home today and worked on the house. I am so exhausted, but trying to get everything perfect for when Hunter comes home. Of course, my every couple hour phone calls into the nurse has to be annoying to the NICU.

The medical supply company delivered Hunter's oxygen tank today.

Hunter had his car seat test today. He passed! He is still event free.

Friday, July 25, 2008

No events. YAY!

When I say no events, Hunter has not had any heart rate or oxygen destats. He is a one day closer to coming home. He can not have any events or his stay may be prolonged.

Hunter had his circumcision done today. I was in the room the entire time. My job was to keep the baby calm. haha - yeah right! He did pretty good considering what was happening to him. Ugh! I focused on him and tried not to watch.

The excitement is boiling.

Discharge Planning

We met with Lourdes, the Discharge Coordinator today. Boy, we never thought that meeting was going to take place. Discharge arrangements have been made. Things seem pretty in order, except for us...scrambling around our house trying to sanitize everything.

Hunter will come home on a monitor. They tried to take his nasal cannula off. Hunter really needs the oxygen. It only took a couple minutes. He will only need to be on the monitor at night. This is a safety measure. He likes to tug on his cannula and pull it out of his nose. We have been learning about oxygen and tube feedings.
Tim practiced on Hunter today. Hunter didn't like him placing the feeding down into his tummy. But, who would. Hunter screamed. For a baby with chronic lung disease, he has a loud cry.

Tomorrow he is having his circumcision. I have to be there early for this

Hunter's coming home soon!!

Hunter is coming home!!!

The neonatologist approached Tim and me today. They feel that he will be ready to come home on Monday, July 28 or Tuesday, July 29th.

Hunter will be sent home on oxygen. He will also need a feeding tube. The feeding tube is due to his lungs. The neonate's feel that he has the feeding coordination down pat. His lungs are holding him back from taking his full feeds. The feeding tube and oxygen will both be temporary, but mandatory. After a discussion, we feel very comfortable and excited that he will be home. We can't wait!!!

Hunter is getting circumsized on Friday. We are in the process of learning how to tube feed him. We are also power cleaning our house preparing for his homecoming. Oh gosh, I can't begin to explain how excited and happy I am. I think I have had permagrin since I heard the news.

Thank you friends for your support and prayers.

THANK YOU GOD FOR LISTENING AND ANSWERING OUR PRAYERS!!!

Hunter Passes His Hearing Test

They turned Hunter down to ¼ liter airflow 100% oxygen and he seems to be tolerating it well.

They did his hearing test. He passed with flying colors.

Sunday, July 20, 2008

At 8 AM, Hunter went to “home oxygen”. That means that his air flow was at 2 liters of flow. It came down to ½ liter of flow. This would be good enough for Hunter to come home. They still want to wean that down to ¼ liter. If they can’t wean that down. A half liter would still be okay. It is 12 hours later and he is still tolerating it. Yay! This is what we have been waiting for.

He is still tolerating his feeds. After his surgery, he had difficulty. His coordination is getting better with his bottle. He gets tired really easy and sometimes can’t finish his entire bottle. We are still working on this. Tim got a second chance at feeding Hunter today. It was nice to see that Hunter did not destat for him. Hunter did really good

Friday, July 18, 2008

Hunter seems to be doing better from his recent heart surgery.

Last Friday, his heart rate and oxygen levels were dropping. This Friday, he is wide eyed and bushy tailed. They say that the eyes are the windows to the soul. I look him in the eyes and see his will to live shining through. He is amazing.

He took a bottle for me. He had a brady (heart rate drop) and a couple destats (oxygen level drop), but overall he did really good. He brought both of them back on his own without intervention. This is huge. He required the nurses to intercede before. He was wore out after 30 cc's. I pulled the bottle back and we put the 15 cc's through his tube. I am so proud of him.

He is still at 2 liters of air flow in his nasal cannula. He is also sitting at 38 % oxygen. In order to come home, they will need to wean his oxygen level to 1/4 liter. His lungs still have work. 109 days and counting..

Hunter's Due Date

Today was Hunter's original due date. It wasn't as hard as I thought it to be. The doctor's told me that I was due on July 17th. God said April 1st. Who am I to argue with the big man?

Hunter took a full bottle today at 2 AM. He is up to full feeds now. I gave him a bottle at 5 PM. He took 41 out of 45 cc's. We tried again at 8 PM. He was so tired.

Wednesday, July 16, 2008

The eye doctor came to see Hunter today.

The verdict:
Hunters eyes are as good as a full term infant. To examine Hunter's eyes, he would never know he was a preemie. Yay!

Tuesday, July 15, 2008

Hunter had a half day of not tolerating his feeds. He had the other half of day where he did tolerate his feeds. He is not up to full feeds by far. He is still at 10cc's. Full feeds are 41 cc's. I did get to bottle feed Hunter today. He tolerated it twice without getting out of breath. His color looks really good. He was a little irriatable today. He also is twitching. The doctors said not to worry about it. It is just withdraws from the medication he was given to sedate him during surgery.

Monday, July 14, 2008

We just got back from the NICU. Here's the update for today:

Hunter seems to be doing a little better today. I can't say that I'm relaxing yet. They took Hunter off the vent. Yay! But, the neonatologist is not sure if he can stay off the vent. He has been back on the nasal cannula since 2:00 PM. He had a good blood gas at 4:00 PM. He had another good blood gas at 10:00 PM. His lungs are still sounding a littly raspy. Therefore, I am not feeling confident or secure yet that he can tolerate the nasal cannula yet.

Before the surgery, Hunter's was at 41 cc's of full feeds and handling it well. They had to stop all feeds for the surgery. They started him on 5 cc's and he is not tolerating it too well. I hope we're not going back to his stomach issues. I'm a little freaked out about that. He is not having bowel movements and his stomach is not processing the tiny amount of 5 cc's. He is having full residuals when they pull back. In english: they put 5 cc's in. Three hours later, they pull back on the feeding tube. They get 5 cc's back. This means he is not digesting anything. I really hope it is just a surgery thing.

Hunter is still in the isolette and not ready for his crib yet. I am sure he misses his mobile, fishy toy, and musical box.

His blood cultures are still coming back as negative for infection. They still have him on two different type of antibiotics. This is a precautionary measure.
They took his bandage off today. We saw where the incision is at. It is still taped up. Gosh, it eats me alive how much suffering he has been through. He is so courageous. I never knew someone could have as much inner strength like these preemies. He amazes me. He has had such a rocky road. I thank God everday that he is here. I am so blessed to have him. He is so precious.

They plan to do another x-ray in the morning. They will also do another blood gas to see how he is tolerating the nasal cannula.

The nurses and doctors are taking such great care of him. They are a wonderful group of people. They really care about Hunter and that makes a huge difference. They are also being extremely patient with me and my million questions. It can't be easy to deal with me; the over sensitive, worry wart mom.

Thank you for your prayers. Thank you for your support. Please continue to pray that Hunter progresses back to his baseline before surgery, that his body heals, begins to tolerate his feed again, for his lungs, and he his home with his family soon.

103 days and counting

Things have been a little crazy. When I'm not in the NICU, I am trying to sleep, eat, or breathe for that matter.

The night of his surgery, he had a difficult time with getting his blood pressure to a stable level. It was too low. He was not putting out good urine, and was swelling. They had him on two different blood pressure medications. It was still not raising his blood pressure. They started him on steroids. The mixture of all of the medications seemed to do the trick. Friday morning, his blood pressure was a lot better. It has stayed at a good level since.

Friday was another rough night. His oxygen levels were dropping very low. His heart rate would drop really low as well. I was really upset and wouldn't watch the monitors. Tim said he saw Hunter's heart rate drop into the teens. The poor nurse and respiratory therapist really had to work hard. They managed to stay on their toes. Hunter needed the neopuff a couple times.

Gosh, both nights scared the crap out of me.

They started Hunter on antibiotics this morning. Hunter's blood pressure is still very good. They have not started to feed him yet. He is still on the vent. He seems more active than he has been. He is not back to his baseline, by far yet. He still has a lot of fluid on his lungs. From my understanding, this is partly due to the PDA and from the water retention after his surgery. He is not destating or having brady's (dropping his oxygen and heart rate) as much as he was the night before. In fact, he hasn't had a major episode since around noon today. We are really hoping that tomorrow is a new day with improvements around the corner.

I miss holding him, kissing him, and seeing his cute little facial reactions to everything. I miss him so much right now. It feels like someone has punched me really hard in the stomach, twisted my insides and ripping them out piece by piece. It is so hard to see your child this sick. St. Joe's have been miracle workers. And, God has played a major part in all of this.

Thank you all for your support and prayers. Each prayer counts! God performs miracles every day. Thank you all for caring so much.

The Aftermath

Hunter is having a lot of problems. After his surgery his blood pressure has been extremely low. It is so low that he has lost his urine output and swelling really bad. They have him on the maximum dosage amount of two different medications to raise his blood pressure. This wasn't working. In addition to the blood pressure medication they started him on an additional steroid medication. We are hoping that this works. He is still on the vent. His color is very pale and poor. This is because the blood doesn't have enough pressure to put to the extremities. I don't want to sound negative. I am just stating the truth right now. I miss him already and his spunky personality. He is so out of it right now.

The PDA Litigation Surgery

They have chairs that you can sit in in the NICU. The NICU has recliners and pretty comfortable. After the surgery, they had the neonatalogist, a pediatrician, a nurse, and a respiratory therapist at his bedside. They were trying to put an arterial line in Hunter. This is a tube that goes directly into an artery, not a vein like an IV. It gives constant blood pressure readings, and accurate blood gases (the level of exchange between the oxygen and carbon dioxide in your blood) I am scared of needles, so I had to sit down. I looked at the entire picture. Hunter - back on a respirator, people surrounding his bedside, and trying to control his vitals. They were all working together to get Hunter to a stable place. It occured it me. It is a picture in my nightmares. Or, like Deja Vu. It was exactly what I see when I close my eyes at night. It is the same picture that has traumatized me from his earlier days. It was like the beginning all over again. But, were not in the beginning. We are 101 days into it and my emotions are completely pooped out. He was supposed to be going home, not back in surgery again! So, for right now, things seem so impossible or far out.

On the flipside, it was exactly what Hunter needed to keep progressing. Thankfully, they found out what the problem is. Hopefully after this downfall, this hurdle, we can move forward. Hopefully, this will make feeding and breathing easier for him.
Hunter went into surgery at 7:30 AM. Hunter came out of surgery at 10:00 AM. They have been right all along. The preparation took a long time. The surgery took longer than we expected, but the surgery went well. We got into the NICU at 5:00 AM. The preparation had already started. The transporter was warming up. Hunter had wires coming from everywhere. He was being hooked to the vent and slowly falling asleep because of the medication they gave him. Before he fell asleep, I got to give him a kiss. I found a spot on his face despite all the wires and tubes. He looked up at me. It could of been my own emotions talking. But, if I could explain his look - he looked confused or scared. I reassured him that I was here, not to be scared, that I love him and would not leave until I knew he was okay. He feel asleep shortly after and has been sleeping all day.

The experts said its not the surgery that we had to worry about. It's the aftermath.
So, here we are in the aftermath. Hunter is having a hard time with his blood pressure. They warned us that this is what they would worry about after surgery and here we are. He has an awful color and to be honest, I'm scared. The medication they give him to control his blood pressure raises his heart rate. Now, they are trying to get to a stable ground - stable heart rate, higher blood pressure. We are in the heart of the storm right now.

As I have already learned, I turn my faith to God. I pray. I fight alongside the bed with Hunter. He is more courageous than I could ever dream of being. He is my hero. I thank God for every second, minute, day, that I have with him.
Thank you for your support and prayers. Thank you for all that has been there for us, helped us, called us, prayed for us, and thought about us. We are in the heart of a storm right now. My motto is: Don't tell God how big your storm is; tell the storm how big your God is

Tuesday, July 8, 2008

What a day this has been! The day started out as it normally does. I wake up and call into the hospital. I knew that the lung specialist was coming in to see Hunter again today. When I called in, the lung specialist was already here.

From what I hear from the nurses, the lung specialist heard something that wasn't quite right in Hunter's chest. He ordered an x-ray. When the x-ray came back, things definetly weren't right. They ordered an echogram. This is for the heart. They found what appears to be an open PDA. It is a valve in the heart that is supposed to close off after birth. When it is open, it pumps to much blood into the lungs.
Hunter had this in the first 3 days of his life. At that time, they gave him medication, did echograms, and his PDA was close. We'll, it reopened. This time, it leaves no other alternative but heart surgery for Hunter. Gestationally speaking, Hunter is too far along for medication and the PDA is too large for medication. It is really common in premature infants to have a PDA, but usually it is fixed earlier in their life. It makes for complications that Hunter is bigger now.

I have been at the hospital since this morning. The surgery will be Thursday morning. We have been loving on Hunter and will continue to do so. Hunter's heart surgeon will be coming from Children's Hospital in Detroit.

They have not been able to wean Hunter from his oxygen and air flow. This PDA is the culprit. It is pumping to much blood flow into Hunter's lungs and drowning him. This would also be the main reason that Hunter is having such a hard time breathing while feeding. He doesn't have the lung capacity for it. It's nice to know what the problem is, so we can fix it. But, heart surgery is scary.

I have not stopped praying. I know that everyone out there has been so supportive. Please continue to pray for Baby Hunter. "With God, All Things Are Possible"
We need to pray that he makes it through the surgery. The surgery does have complication risks, such as infection, difficult controlling his blood pressure, etc.

After the PDA is fixed, Hunter shouldn't have any other complications in regards to his heart. 99 days and counting....my heart goes out to all struggling with their micro preemies: past, present, and future.

Monday, July 7, 2008

Hunter had his head ultrasound today. It was unchanged from a month ago. This means that we are free and clear from a condition called PVL. PVL is serious. It would increase his chances for cerebral palsy, learning developmental delays, and so forth. It basically turns the brain into swiss cheese. These little guys are at an increased risk of developing it. I was ecstatic to say the least that he is free and clear. It was one thing we could check off of the list of things to worry about.
Physical Therapy came up today. They tried a new type of nipple on Hunter today. It is a silicone nipple. It is harder than the normal nipple. But, it worked. It forced him to pace himself. He was able to consume 21 out of 41 cc's today. Then, he got tuckered out.

I got to feed him for the first time at 8 PM. He was able to consume 12 out of 41 cc's. He did really well for me. His oxygen dropped a couple times. I think he had one or two heart rate dips (brady's). He got pooped out after 20 minutes or so. We pulled back and fed it through the tube.

There hasn't been any real change in his oxygen and air flow settings. He is sitting at 2 liters of air flow. He needs to come down to 1/4 liters of air flow before he can come home. He is at 40% oxygen. Oxygen won't matter when he comes home. It will be set at one setting: 100%. For right now, he needs to come down on oxygen for them to wean the air flow. It correlates to one another.

Sunday, July 6, 2008

For starters, our friend Troy had surgery to fix his bowel. His surgery went well. We are praying that infection will not set in and hope to be reunited with the entire family soon.

It was bath night for Hunter. He is weighing in at 4 pounds 13 ounces. He is 17 inches long.

We are still working on the feeding with Hunter. Feeding is a lot of work for these micro preemies. They have to coordinate so much at one time. Their lungs have to work a little harder and baby Hunter's lungs are working just as hard as they can.
The doctors readjusted his diuretics. They continue to increase his dosage. They have to be careful do it over a period of time. It could throw off his electrolytes if they aren't careful. They hope to see more fluid come off his lungs, making it easier for him to breath, which should help him with his feeds. We hope to see an improvement over the next couple of days. His main goals are still feeding. This is a huge hurdle for him. His lungs still need some work. Today he was able to consume 21 cc's of formula at 8 AM without an event. He is eating 40 cc's through his feeding tube. They tried again today at 5PM. He only got 5 CC's, had a hard time, his heart rate kept dropping (aka brady's) and dropping his oxygen levels (aka destats).

Hunter is getting another head ultrasound tomorrow. Hopefully, it will be his last. We will be praying for good test results from that.

Saturday, July 5, 2008

I wanted to take this opportunity to write a special journal entry. You know how the saying goes; you don't know what you've got till it’s gone. Or, is that a song from the 80's?

We'll regardless; I met a really nice couple in the NICU. Over the course of a couple months, we became friends and a great support to one another. Her son was born at 26 weeks gestation. We were each other's cheerleaders, rooting for each other’s families and micro preemies to make it through another day. I went to visit Hunter. When I walked past the bed of where her baby was, he was gone. The bed was empty, the monitors were off. Where did her baby go? My heart immediately sank. I knew he was having stomach issues, but I didn't realize the severity to it. The hospital could not tell me anything because of the HIPAA laws. So, as humans, we fear the worse.

I cried all the way home from the hospital and cried myself to sleep that night. This time it wasn't for Hunter, but for Troy; a baby that means so much to me and for this family, who have had such an impact on me and a part of my heart. It wasn't until today, that I heard he was transferred to another hospital. I breathed a sigh of relief that it wasn't the worst case that I initially imagined. But, gosh....it’s not good. It's a huge set back to a baby that was doing fantastic. It is a huge set back to a family that has high hopes. I can't begin to imagine what they are feeling, but I can say that I understand. This road is a long one filled with a bunch of unknowns. I never knew the true meaning of uncertainty until now.
It's another one of life's lessons that I have learned. It is taking one day at a time. At the end of the day, when you have the people in your life that means the world to you, you can consider it a good day.

I left a message for Troy's mom today. I tried really hard not to cry, but I couldn't help myself. I love this family. When I visit my son at St. Joes, I miss not knowing that they won't be at St. Joe's. As I resort to the beginning of this journal entry, I took for granted that Joy, Dave, Ronnie and Troy would be there every day that I went to see my son. I took for granted that I would always be able to exchange our kind words of support to one another. She doesn't know, but there were many days that she pulled me through. She helped me with a simple hug or with words of encouragement and I miss her.

I am saying an extra prayer tonight for Troy. I am still Troy's cheerleader. I am still rooting for him. I am still rooting for his family. For Dave and Joy, they’re special people in this world sent straight from Heaven. Angels! I will be praying for you. I can't wait to see you guys again.

Friday, July 4, 2008

Gosh, I realized that I haven't written in a couple days. Now, I am trying to think back to what has happened. They had to increase Hunter's diuretics. He was having more episodes. He would drop his oxygen levels and required more oxygen. I asked the doctor if she felt like it was a setback. She did not feel like it was a setback, but more like a tune up. As his weight is increasing, he needs higher dosing of medication, including his diuretics.

Speaking of weight, Hunter is up to 4 pounds 11 ounces. What a big boy!
Hunter was doing well with feeding through a bottle. He has been having difficulty the last couple days. As I have to remind myself, two steps forward, one step back. They still try the bottle twice a day. If he drops his heart rate or oxygen levels, then back to the feeding tube it goes.

I am having a hard time with patience right now. Hunter has been in the NICU for 95 days. I have such a hard time leaving him and a hard time being apart from him. Sometimes he is awake when I have to go home. It hurts so bad to walk away. I really have to stay focused. He is here! That is what's important. This is so hard. I always thought that whatever I was faced with I could handle. This situation is different. I have to take it day by day. I, often, have to be reminded that I need to take it day by day. As my due date approaches, I find it getter harder. A part of me expected him home by his due date. I should've known. The entire time the doctors told me not to expect it. His lungs are his trouble. July seemed so far out...It is here before we knew it. The road seems so long.

Tuesday, July 1, 2008

Today marks Hunter's three month birthday. He has also been in the hospital for 92 days today. We hope he will be home soon. But, he is just not quite there yet. The doctors orders are written that the nurses can only feed him twice a day. This can be very exhausting for him and they don't want to wear him out. Hunter did good for one of his feeding. The other one he had some destats. He is learning and I am so proud of him. Oh, 4 pounds 5 ounces and gaining...

Monday, June 30, 2008

Hunter took in his entire bottle without an episode today at 8 AM. They tried again around midday and he was too tired. His 5 o'clock feeding was different. He did it once more. Yeah! This is so exciting and such a huge hurdle. I am so proud of him. His strength amazes me.

Sunday, June 29, 2008

Hunter is at 4 pounds, 4 ounces. He is 17 1/2 inches long. Last week he was only15.75inches long. Oh my! He is so precious. His cheeks and face is filling out more. I will have to post new pictures soon.

Hunter tried the suck, swallow, and breathe again today with his feeding. This is such a huge hurdle that he has to overcome. He did better today than he has been doing. He was able to coordinate the suck, swallow, and breathe twice without choking. He got exhausted after 15 minutes. If we had to give Hunter a grade, he would have got a C-. To mommy, he was a superstar. He never got this far before. This is such a huge step in the right direction. I have his first bottle that I will save forever.

Friday, June 27, 2008

I haven't written for a couple days because there isn't too much to report. Things are moving at a snails pace.

They tried to wean the flow of air pressure today on Hunter's cannula. His lungs weren't ready and they had to turn it back up. It was worth a try.
He is getting his formula through a feeding tube right now. He has crossed over to the 4 pound club. He is weighing 4 pound 2 ounces.

Tuesday, June 24, 2008

Gosh, Hunter is on the brink of being in the 4 pound club. Yes, my little man is almost a 4 pounder. His weight was 3.159. Yes. It is .001 pounds away from 4 pounds and depending on how he moved he would cross over to 4.000 pounds.

On to something new, Hunter ear drainage did come back as a postive staph. They are not treating it right now because there is no inflammation present. The doctors and nurses will watch it closely for any changes. We are hoping it clears up on its own.
Feeding from a bottle is still a challenge for Hunter. They have decided that they are going to dip his binky in formula three times a day. They don't want to stress him out with bottle feeding him right now.

Monday, June 23, 2008

The biggest hurdle that Hunter has to overcome is his feeding from a bottle and not a feeding tube.

It takes 25 muscles coordinating together to learn how to breathe and swallow your food. These muscles are underdeveloped in Hunter. This is completely normal for micro preemies to have this problem. Before today, they were trying to feed Hunter every couple days. He has problems with his heart rate and oxygen levels dropping. They are going to start trying to feed him every day now. They will continue to do this until he learns how.

We still aren't sure about the drainage in his ears. The neonatologist is stumped. It doesn't have any characteristics of an infection. They have a culture sent down to the lab and we don't have the results. They might order an ear, nose, and throat specialist to come and look. Right now, they are watching it closely.

Sunday, June 22, 2008

The daytime nurse spotted that Hunter had some drainage coming out of his right ear today. They cultured it and sent it down for lab work. It could be another infection. We are crossing our fingers.

Hunter got his first bath from his Mommy today. I wanted to say that he enjoyed it. But, ha...he threw a fit. I love hearing him cry. I know that sounds awful. But, when you have a son that was hooked to a respirator for the first two months of his life; it feels good to hear him make noise. He wasn't able to cry hooked to a respirator.

Saturday, June 21, 2008

Hunter is still doing well on his nasal cannula. He has not needed the help of the CPAP for a day and a half.

He also received his first set of vaccinations today. The nurses thought it was funny because he did not fuss like a normal baby. He stared at his mobile and was quiet through the whole process. Hunter was probably thinking, "Is that all you've got". He is my superstar.

Hunter weighs 3 pounds 12 ounces now. He is growing.

Friday, June 20, 2008

Hunter has been on the nasal cannula for 24 hours now. He has not needed the CPAP.

We are hoping for the best and praying that his lungs can handle the extra work of a nasal cannula.

Wednesday, June 18, 2008

Hunter had eye surgery two weeks ago. We had to wait a "couple weeks" to know if the surgery took or not. If not, it would require more surgery with the possibility that Hunter could go blind due to his prematurity. If the surgery worked, he could live a normal life.

This Wednesday marked the "couple week" mark. We just got the news.

Hunter's eyes took to the surgery. His right eye is completely normal. His left eye still has "slight" abnormal blood vessel growth, but nothing to be alarmed with. He can tell that the left eye is taking a little longer to heal, but it is healing. He is sure that when he checks him next week, his left eye will be as normal as the right. Tim and me are both nearsighted. Besides the risk of "normal genetics", Hunter has beat another obstacle. His eyes are going to be fine. He conquered retinopathy of prematurity.

Cheers for Hunter! Yea!!!!

Hunter has also been doing really good on his nasal cannula. They don't want to push him. So, they are going to keep it the same today. He will stay at 9 hours on cannula 3 hours on CPAP. This is a rotation 9 hours, 3 hours, 9 hours, 3 hours = 24 hours.