The Big Day

My Hunter came home today!

We spent the night with him at the hospital last night. That gave us a good chance to become accustomed to all of his equipment and medications first hand before bringing him home.

It was such a strange feeling walking out of the hospital thinking that we would never be back there again. It feels strange right now sitting here and not thinking that I have to call Hunter's nurse before I go to bed.

The last few days have been a mixed bag of emotions for us. Of course we were ecstatic about Hunter coming home. At the same time we were afraid, intimidated and anxious. On top of all of that we've had to say goodbye to the people who have spent the last five months caring for our little boy. A lot of the people at the hospital have become close to Hunter and became friends of ours.

It was comforting over the recent days at the hospital as everyone came by to say goodbye to Hunter. His doctors and nurses of course, but also his respiratory therapists, housekeepers and the front desk ladies. We're very thankful that even though he had to spend five months in the hospital that he was fortunate enough to be with people who really cared for him.

This is such a big change for us and for Hunter. He has already realized that he doesn't live at the hospital any more. When we got him home he was so mad at us, I think it was because he was uncomfortable being in a new place. He was sleepy and we tried to get him to nap but he just kept screaming - that's not like Hunter.

Things have calmed down and we we've been able to have some fun with him over the rest of the day. It's a lot of work having him at home, but well worth it. He's fast asleep in his new bed right now, hooked up to all of his machines. It's good to have him home.

When is Hunter Coming Home?

The last few days we've been spending all of our free time at the hospital learning about everything we need to bring Hunter home.

Today we had training on all of his accessories. We're basically bringing home a version of everything he has in the hospital. He will have his oxygen, a food pump, a nebulizer and an apnea monitor.

We're all ready for him. Mommy has spent a lot of time with Hunter learning how to feed him and get his medicines for him. They're still saying that he may come home tomorrow. They aren't saying anything for sure because he hasn't been gaining weight (how strange). The last few nights he has been losing weight so we are really hoping that when they weigh him tonight it will be an increase. Last I heard he was right around 13 lbs.

Great News

Great News!

Hunter may be coming home.

Friday!

We've had training on the G Tube. Hunter recovered from his surgery well. His weight is stable. He's doing a great job to transitioning to his new way of eating. If he continues to eat well overnight and through tomorrow the plan is to bring him home Friday.

We should know for sure tomorrow.

We're very excited!

Recovery

Hunter is recovering well from his surgery.

The first 24 hours after his surgery he was very much "out of it". He was on sedatives and pain killers to keep him relaxed. Whenever he would wake up he would start chewing and pulling on his ventilator tube. He also seemed very irritable, but he's back to his normal self now.

The biggest concern Doctor had about the surgery was how he would do with coming back off the vent. Hunter did an excellent job, the nurse was able to take the ventilator away within 12 hours of his surgery. I hear that some babies don't do so well with it and become dependent on it again.

Hunter has had his catheter removed, he's back in his normal bed and he's gaining weight again. When I talked to Nurse last night she hadn't weighed him yet but the night before he was a whopping 13 lbs, 12 oz.

They haven't said much about when Hunter will be able to come home. What I know so far is that he needs to be on steady feedings, which he is quickly on the way to accomplishing. It sounds like our little man could be home very soon.

Surgery Day

Hunter had his surgery today. The entire surgery took about 2 1/2 hours. During those 2 1/2 hours they poked five holes in Hunter's belly and inserted the G tube.

They also did a Nissen, which is where they wrap the top of the stomach around his esophagus to stop him from refluxing. The urologist was also there and he examined Hunter to see why they were having trouble cathetering him, and he inserted a catheter. He's had a very busy day.

While he was in surgery he was sedated and paralyzed, it was very strange seeing him come back unable to move. The paralytic wore off within an hour but until it wore off he was unable to anything, even breathe.

The picture is from right before his surgery, it looks like he knows something is going to happen. He's definitely not smiling any more.

I also have a picture of him post-surgery - if you want to see it click the link below. This picture was taken right afterwards while he was still paralyzed, he looks like a completely different boy.

Hunter Post-Surgery Picture

Hunter's Surgery Time

Tomorrow Hunter's G-Tube and Nissen surgery is scheduled for 10am!

If you could please keep Hunter in your thoughts and prayers for tomorrow that would be greatly appreciated!!!

Breaking the Rules

Yesterday Grandma came to pick up Alyssa and Gavin. She's watching them through Hunter's surgery in a few days. Since Hunter's brother and sister weren't here we were able to go down to the hospital right after work.

We don't usually go until later in the evening because the NICU closes between 6:45 and 8:00, it just makes more sense to go after they reopen. When 6:45 came around we were hiding so they couldn't kick us out. We were able to play with Hunter until he fell asleep at night.

When we got into the NICU we saw Hunter going on a walk around the unit. Nurse had him in a stroller and was taking him around to visit the other nurses and babies. I think he enjoyed it, I know the nurses did.

Smiles

I just wanted to post this real fast before heading off to work.

Last night Hunter was smiling in his sleep, I managed to snap a quick picture while I was holding him.

It doesn't look like they did the PICC in his thigh. He has something in his arm - the one not in the picture. But I can't tell if it's a PICC or IV, and I forgot to ask.

He's over 13 pounds now. 13 lbs, 2 oz was his most recent weight.

Big Old Boy

It sounds like yesterday was a very interesting day for my little Hunter. I didn't get in to visit him until around 9 o'clock p.m. When I got to his room I was surprised to see four nurses standing around him. I was even more surprised to see that one of them was his day nurse, she must have worked a 14 or 15 hour day just for Hunter.

The reason they were all there was because they were having some trouble with his PICC line. From what I've heard a PICC is a more permanent version of an IV. This was a long thin tube (about 30 cm or one foot) that went from his thumb all the way into his heart. He had this because he is going to be on the antibiotics until he has his surgery, then he'll be fed through it while the G-tube heals. This also means less poking (IVs are replaced every day or so).

Anyway, since he is an active sweaty baby he was slowly pulling the PICC out of his thumb. This could have lead to another infection. They spent a few hours trying to get the PICC to work but eventually had to drop that idea and do an IV for the night. Tomorrow there is a specialist coming in to insert a PICC into the artery that runs down his thigh.

After all of this excitement he was exhausted and we got to spend some quality cuddling time together. As I was holding him he was looking me straight in the eye. I smiled at him and he smiled back. His smile was so big he dropped the pacifier right out of his mouth. Of course that made him angry and I didn't get any more smiles for the night. That one was precious enough though.

Hunter Will Be Okay

It's been a very busy few days. I have plenty of good news though.

Hunter is pretty much all better. His spinal tap came out completely clear. They had to wait 48 hours to say for sure that nothing was going to grow.

They were able to confirm e. coli in both his urine and his blood so they were then able to treat it specifically.

Hunter is now over 12 1/2 pounds. That's five times his birth weight.

Today is his five month birthday. We certainly expected him to be home by now.

Lastly, his surgery has been rescheduled to Friday the 23rd.

Hunter's Infection Update

The last two days have been very scary and exciting for Hunter. I don't remember what I wrote about last so some of this might overlap.

Two days ago Nurse found that Hunter had a fever of about 102. This got their attention immediately and they started tests to determine the cause of the fever. To cover all the bases he was started on antibiotics

Yesterday his doctor found an infection. Since the bacteria was found in his urine they first pegged it as a urinary tract infection. Then they thought they may have found something in his lungs so it was then decided that he may have pneumonia also.

A little bit later the blood and urine cultures from the day before started to grow enough that they were able to begin to identify the bacteria. They found that it was from a dangerous type of bacteria (gram negative if that means anything to anyone) and that it was in his blood which means the infection could spread to any part of his body. This set off a new alarm that the infection could spread to his brain and cause Meningitis which can lead to developmental issues, hearing loss, or worse.

To see if the infection had spread that far he was scheduled to have a spinal tap. The spinal tap sounds very scary but Nurse assured us that it is very safe. She also said that in the past it was standard that all preemies had a spinal tap but that is no longer the case.

Today Hunter had his spinal. The fluid they collected was as clear as water. With an infection the fluid would normally be cloudy or yellow. They didn't find anything under the microscope and nothing is growing on the culture yet. It can take 24-48 hours for a culture to grow though.

It's been long enough to determine the bacteria in his urine - e. coli. Now they know exactly what to treat him for.

It seems that Hunter will be able to make it out of this with little more than a urinary tract infection. Mommy and I can finally breathe again.

Hunter has a Fever

Hunter is growing so big. He hit 12 pounds, last night his official weight was 12 lbs, 2 oz. He is also on to size 2 diapers. Were were planning on Hunter being home by now so we have several bags of Preemie, Newborn and Size 1 diapers that he can never use now :(

His surgery is still scheduled for Wednesday. But there's a small problem. Today around 2 o'clock Nurse took Hunter's temperature to find that has a small fever. They don't know yet what has caused it but they ran several tests to determine if it's an infection or virus. So far they didn't find any virus but they are going to do some bigger tests Monday.

If Hunter's fever doesn't come down by Wednesday it sounds like they will have to delay the surgery which means he will be in the hospital even longer. He will have been in the hospital for five months this Friday.

Alyssa and Gavin visit Hunter

Over the weekend Alyssa and Gavin were able to use their special second pass to see their brother. He's been in the hospital for nearly 5 months now and they've only been able to see him twice. They made sure to take advantage of the time they had there, we played together for over an hour.

Last time they were able to see him they were afraid. But I can't blame them, he had an IV and was on CPAP. This time he wasn't hooked up to as many things and was able to play on the floor with them. Gavin had a pretty short attention span and soon resorting to playing hopscotch on Hunter's floor mat, but Alyssa had a lot of fun with him.

Alyssa was able to hold him for a little while (with Nurse's assistance). She had planned on singing him three songs, but she ended up singing one bonus song for him. He really enjoyed listening to his sister sing for him, he was extremely attentive the whole time she sang. His playlist that day consisted of Itsy Bitsy Spider, Mary Had a Little Lamb, The Alphabet Song, and Twinkle Twinkle Little Star.

Alyssa also remembered a picture that she had drawn for him. We delivered it the last time they came to visit him, it's been hanging on his wall ever since. Before we delivered it Mommy wrote a note for Hunter on the picture. Alyssa saw the note and was angry that someone had colored on her drawing... she blamed it on Nurse though.

Hunter's Surgery

It doesn't sound like we're going to be able to have Hunter's surgery any sooner than the 14th. The reason is because his surgery will require two doctors working simultaneously. They need to be able to schedule the surgery fora time that both doctors are available at the same time. To make that more difficult, both of the doctors are taking vacations back to back.

Nurse said that it's possible that he could come home within a week of the surgery. We're all very excited about that. Now all we have to do is wait, but we're used to that by now.

Eleven Pounds

Hunter is 11 lbs now. He hit that mark last night, he is officially 11 lbs, 1 oz. I also was able to see his information plotted on a growth chart.

On a growth chart they take his measurements for weight, length, head diameter and compare them to the average for kids that age. Then you can see at which percentile they are at. For example, Gavin is small. He has consistently had his weight at the 25% meaning his weight is below average for kids his age. He is also under 5% for height, so he's also pretty short. Alyssa is also small on both, she has always been at or under 25% too.

Hunter is still so young and he has so much growing to do, so I don't know how much his matter right now. If he was born on his due date he'd be about 1 1/2 months old now. When he is compared to other 2 month olds, he is around 10-25% on length and weight. When he is compared to other 1 month olds, he is around 50-75% on both. I think this means he is right about average, which would still make him bigger than his brother and sister.

When is the Surgery?

Doctor is trying to sweet talk the surgeons into moving Hunter's surgery up. From what I heard it sounds like we may not have much warning before they do the surgery. I guess right now all we do is sit and wait. At least we know that the latest it will be is the 14th.

Weekend Update

Over the weekend we got a new doctor, one that we have never seen before. We were up in South Bend for the March of Dimes walk so we haven't had the opportunity to meet him yet. I did get talk to him and he sounds like a cool guy (an important attribute for a doctor). He's been in touch with the surgeon and is trying to get Hunter's surgery moved up a little bit. We should hear a response sometime this week.

Also this week, Hunter will be getting his 24-hour urine collection. It was finally approved to do it again and they will be doing it as soon as they get the test from Chicago. Doctor admits that he has never done one of these tests before so this time they are going to take it slow and make sure that everything is done correctly. So far all of Hunter's doctors have confessed that they've never done a test like - it's new for everybody.

Hunter is still growing very fast. Saturday night he was 10 lbs, 12 oz. During his time in the hospital he has gone through the Preemie size of diapers and Newborn size too, he's on to Size 1. He's also grown through two sizes of clothes.

The New Plan

Hunter is going to have two surgeries. The first one is to tighten up the area between his stomach and his esophagus. The purpose for this is to help keep him from refluxing. Even though he isn't being fed into his stomach, they say that his reflux is so severe that he is refluxing stomach acid and still aspirating it into his lungs.

The second surgery is going to be the g tube. His doctors and nurses have all said that it's no big deal.

Right now his surgery is scheduled for May 14th. Doctor said that she will try to get it pushed a little bit sooner.

Swallow Study

So Hunter didn't do well on his swallow study. It sounds as though he hasn't improved at all in the last month.

That means that he is now going to have a G Tube. I don't know what the next step is yet, we should find out soon.

Okay, Swallow Study is Today

I thought the swallow study was supposed to be yesterday... I was wrong. It's today.

They had to schedule with a doctor who doesn't work at Hunter's hospital, but she's available to do the test this morning.

Hopefully by lunch time we'll at least have the results. I don't know when the doctor will have a plan for the rest of his time there.

Night Nurse was explaining what they are going to do with the test. They are going to give him formula with (Barium maybe?) that will show up on some sort of X-ray machine. Then they'll be able to see where the formula goes while he's eating. They will try feeding him normal formula, and then thicken it to a honey thickness and see how he handles both.

Night Nurse said that in the last test he failed with normal formula but didn't do as bad with the honey formula. Because of that, she warned me that he may fail his normal formula again, but she expects him to do better on the thick formula.

Oh, and he's ten pounds now. Four-times his birth weight - Wow! His official weight last night was 10 lbs, 2 oz.

Swallow Study

Tomorrow is supposed to be Hunter's swallow study. His doctor thinks that he's ready for it, so hopefully tomorrow we'll get be getting some good news. I think that the plan is to set up a schedule for coming home no matter the results of the test. The test will just determine how he comes home.

When I visited him yesterday he was already asleep. Holding him reminded me of when Brother and Sister were smaller and how much I enjoyed holding them. It feels like we've been missing an important part of his life. We can't do things with him that we were able to do with his siblings. Even though we can hold him and play with him he is tied down by a 4-foot tube.

Haven't Posted in a While

I haven't posted in a while, but up until recently there hasn't been much going on. Most of last week Hunter has not had his primary nurses. I find that since they only work with him for a day or two they don't know him as well and it's harder to get information out of them. The last couple of days he has had some of his regular nurses again, and they seem to be getting the ball rolling on trying to get Hunter home.

He has been growing very very well. Last night he was up to 9 lbs, 13.5 oz. He's big enough now that he is no longer in newborn diapers and is on to Size 1. I was telling the nurse it would be convenient if we can get him home in size 5, because that's what his brother wears. Her response was, "I'm sure you can if you fold it down right"... I'll remember that.

Hunter has been having a lot of time with physical therapists. They spend about an hour with him every day, and sometimes twice a day. They make sure that he is developing the way a baby should. He has a mat in his room they put down on the floor and give him some belly time, they make sure his coordination is developing, and other things babies should do.

Yesterday we brought in some toys for Hunter so he can have things to play with and grab at for the times that physical therapy isn't there and the nurses may be busy with their other kids. We also brought in a bathtub and I was able to give him a bath for the first time. He didn't know how to react to being in the bathtub. After setting him in there he gave me a look like he didn't know if he was supposed to be enjoying it or not. After a few minutes he decided that he could enjoy it.

He is supposed to have another swallow study this week. If they determine that he needs the G tube, he could come home within a few weeks of the study.

Picture Day

Here are the pictures I promised

No Swallow Study

Hunter wasn't able to have his swallow study yesterday. Doctor said that he doesn't seem to be interested in taking a bottle. I don't know what the next step is.

I hear they might try to catheter him again soon. Then they can determine what type of kidney stones he has. He had another test to look at his kidneys, but there was no change.

He's continuing to grow quickly. When he was weighed last night he was up to an astonishing 9 lbs, 11 oz. Hunter is getting so very big.

It's very frustrating that nothing seems to be happening. He'll be four months old tomorrow, and nobody is talking about him coming home. It sounds like whenever he does get to come home he will be on oxygen and have a tube in his stomach, but his oxygen is still at too high a level for him to come home. Night nurse said that they will probably start talking about the G tube sometime soon, since Doctor couldn't get him to take a bottle.

I haven't been posting pictures lately because most of my posts have been from work, one day I'll just put them all up :)

I Don't Know When Hunter's Coming Home

Today Hunter's doctor seemed a bit more negative than usual. He's concerned about Hunter's ability to do the swallow study on Monday. Doctor says that he doesn't seem very interested in his pacifier, and if he doesn't want to suck then they won't be able to do the swallow study. This concerns me because I'm thinking it may mean Hunter is developing an oral aversion. Oral aversion can happen when babies aren't fed through a bottle and they lose the desire to eat from a bottle. Maybe Hunter was just having a bad day though, because every time I give him his pacifier he seems to really enjoy it.

It sounded to me that they may delay his swallow study. Doctor wants the occupational therapists to spend some time with Hunter and determine whether or not he's ready for the test. We were looking forward to the test, especially if the results were good. I guess we'll be finding out soon about when the study will be - Monday isn't far off.

Progress

Hunter is doing so well. He is 9 lbs, 3 oz. He is definitely gaining weight and a good rate, usually 2 oz per day.

The doctors have been lowering his oxygen very fast, too. I don't even remember what he was at the last time I posted. He is currently at one liter and Doctor said he was going to try to lower it more today. I'd bet that they start slowing down how they lower his oxygen flow; when he was just over one liter he was at around 85% oxygen but once they lowered it to one liter they had to increase it to over 99%. Thats too many numbers.

Hunter is scheduled to get his swallow study on Monday. Mommy and I are very eager to hear the results from this test. The swallow study is going to be a very important part of determining when he is able to come home. His food has been pumped directly past his stomach for quite a while now, I don't think anybody has any clue how this will turn out.

Growing and Growing

We have two good pieces of news to report.

1. Hunter hit 9 pounds yesterday. His official weight last night was 9 lbs, 1 oz.

2. Doctor is planning on lowering his oxygen again. He is planning on lowering it to 1 liter. We're really hoping that he can do well at 1 liter, because that is the most that he can be on before they let him come home.

Lowering Oxygen Again

Hunter keeps making progress. I like hearing good news. Today they turned his oxygen flow down to 1 1/4 liters. That's down from 1 1/2 which he didn't spend much time at. When he finally hits that one liter mark, that will be a huge milestone. When he finally does come home it will be on one liter (at most).

We don't know how his reflux is doing. They are planning another swallow study to check it out, but it hasn't been scheduled yet. Going by what the other doctor said, if his reflux improves they will give him more time and do another swallow study. We really want his reflux to improve because that delays the chance that he'll need the G tube surgery.

Today when I was holding him he was staring me right in the eyes and seemed to be listening to everything I told him. We talked about all the usual stuff - Mommy and I want him to come home, I told him about my day, and we discussed how handsome he is. Then he fell asleep :)

100th Post

Hunter has been in the hospital long enough for me to be able post 100 times to this blog.

He's still growing. Last night he was up to 8 lbs, 12 oz. He hasn't had any new changes recently. At some point they increased his calories back up to 30. That's the maximum amount they do, it sounds like if you go higher than that most babies have trouble digesting it. I'd bet they started doing it just a few days ago, because the last few days he's been gaining weight at the rate that he was last time he had 30-cal formula.

There are 2 and a half hours of each day that we are not allowed to see our baby. There's a little over an hour in the morning, and again at night. They close the NICU down when the nurses change their shift. This is also the time that the nurses pass the days baby notes on to the next nurse. I was told that the reason for this is to respect family privacy, so other families aren't able to overhear all of Hunter's personal information.

Its a strange feeling knowing that we can't see our baby. Even if it is only for short time each day.

Lowering the Oxygen

They are going to lower Hunter's oxygen again. Hooray!

Today they are going to lower the flow down to 1.5 liters. That's one step closer to a level that he could come home on. We don't know yet how he will respond to that, but judging by how well has has been doing on 2 liters I'm feeling pretty good.

He has been so active and attentive lately. The other day we were working on sitting up and holding his head up on his own and he kept looking over at the family Christmas photo sitting by his window. No matter how hard I tried to get him to pay attention to me (selfish) he just wanted to see everybody in the picture... so I let him.

He is doing things that a regular newborn does. When I'd let him lie on his belly he would try to lift his head up in the floppy way that babies do. He reaches out to grab at things, and really enjoys his mobile. He is developing a normal sleeping pattern. Night nurse says that she rarely wakes him up at night. He will normally sleep from 10 pm through the night. Then he spends most of his day hanging out with Day nurse, playing in his bouncy seat, or being amazed by his mobile.

The Plan

I was able to talk to Doctor yesterday and we went over what the short-term plan is for Hunter. When I say short-term it's not really that short, it could be about a month. Although Hunter is doing very well and has noticable improvements he is still going pretty slow.

He has been gaining weight again, as of last night he was all the way up to 8 lbs 7.5 oz, nearly six pounds over his birth weight.

Back to the plan. There are two major problems keeping Hunter in the hospital - his lungs and his reflux. It sounds like they can only treat one at a time, and only if the other gets better on it's own. If Hunter's reflux gets better then they can send him home with oxygen, or if his lungs get better he can have the G tube surgery and then come home after that. The problem is that they can't do both. Hunter's lungs are too damaged to safely do the G tube surgery, it would be dangerous to use anesthetics on him and he would have to go back on a ventilator which would be no good for his lungs.

The current plan is to wait about two weeks and let him continue to improve. The goal is to get him down to 1 liter of oxygen before he comes home, 1/2, 1/4, or 1/8 would be better though. After the two weeks they will do another swallow study to determine if his reflux is improving. The results of that test will help determine what the next and hopefully final step of his long hospital journey will be.

Yay Hunter - Good Breathing News

Hunter is moving forward with his breathing. Ever since he left CPAP he's been on a very high flow of oxygen (3 liters). He has been doing very well on that high flow, so well in fact that Doctor decided to lower it to 2 liters. He has also been doing very well on this lower flow of oxygen.

Nurse said that they are definitely planning on sending him home on oxygen, but at least she was talking about sending him home. The most exciting part is that she was actually talking about sending him home! She said "Soon"! I bet her soon is very different from my soon though. Nurse says they want to get his flow down to 1/4 liter before sending him home.

He had his kidney ultrasound yesterday, there's no change on the kidney stones. I don't know how they are planning on treating those. For now they changed his formula to one with less calcium, that is supposed to keep new stones from forming.

Constant Feedings

Ever since Doctor decreased the number of calories in Hunter's meals his weight gain has slowed down.

He is still gaining weight, but it's been a bit slower. He spent a few days hovering around 8 pounds, then jumped up to 8 lbs, 5 oz and that's where he's been all weekend. His new doctor thinks he should be gaining weight better than that so they made a change to how they feed him. She put him on constant feedings so he always has formula coming in through that nose tube. At first they were doing 19 ml per hour which was a small increase in the amount of formula he was getting. Previously he was getting 55 ml per hour and this adds up to 57. Since then they've increased it to 20 ml per hour which gives him 60 ml (2 oz) per meal.

He's doing very well without CPAP. Last night his oxygen requirements and respiratory rates were both higher than usual. He was also very active last night though. I was helping him sit up and he was very happy to be looking around. After a while of playing he grabbed onto my hand and decided it was nap time.

He's scheduled for more routine tests this week. I don't even remember what they are, I do know that he is getting another kidney ultrasound to check on the stones. I'm eager to hear the results for that.

Not Much to Say

Ever since the doctor lowered Hunter's calories he hasn't been gaining much weight. He's been hovering right around 8 pounds for the last few days. Doctor doesn't seem very concerned about that yet, so I don't either.

He is doing very well. When he has his oxygen on he is just like any other newborn. He breathes well and keeps his oxygen up.

Last night he was awake the whole time I was there. He was watching as I would talk to him and tell him stories. He was squirming all over the place. If he could only do that without being hooked up to the tubes and wires that would be wonderful.

I haven't heard any more about the tummy tube surgery that they said may be necessary. Since he is getting better I have a feeling that they may have to do it. There's not much we can do about it, I'd just much rather feed him from a bottle.

Off CPAP Again

They took Hunter off of CPAP again. I guess that means that any strain that was on his heart has been removed. That's a huge relief.

While I was visiting him yesterday he was doing so well, they had his CPAP oxygen turned to only around 40% and he was constantly staying over 98% oxygen saturation. He's also doing excellent without the CPAP now, his breathing and slowed down and he's not requiring as much oxygen as he was before they put him on CPAP. He seems to work this way though, he'll be fine for a few days after being on CPAP then he gets worn out. We're really hoping that he will only get better from here.

His antibiotics are done, so there's no more worries about an infection from the catheter incident of several days ago. I asked Nurse if that meant they were going to try the urine sample again, the answer is "No."

The nurses have all been saying that he gets very angry sometimes and shouts at the top of his lungs. I want to hear him yelling and crying, but he never does it when I'm around. I hope it stays that way once he comes home, too.

Hunter's First Easter

For Hunter's first Easter he took a day to just relax. Doctor was very nice to him, the only thing she ordered was to decrease the amount of calories in his formula. He was getting 30 calories (thats the maximum) with every feeding. They're comfortable with his weight gain and lowered it to 27.

He's still on CPAP and it's settings haven't changed. His weight hasn't changed much either, he gained about 10 grams which leaves him still around 8 pounds.

Nurse put a silly Easter picture of Hunter up on his wall, she took his picture then colored some bunny ears on top of his head. I wonder how many more first holidays we'll have to celebrate with Hunter in the hospital. I certainly hope it's not much more.

Eight Pounds

Hunter hit the big eight pounds.

He's doing very well on his CPAP. Yesterday they were able to turn his oxygen down to around 30%. Room air is around 21% so he's doing better with CPAP then he ever was with the regular oxygen. This makes me feel optimistic that his time with CPAP will be quite short this time. I wouldn't be surprised if the doctor kept him on it just so he doesn't have to strain with the oxygen. I feel optimistic that he will be ready to come off CPAP whenever the doctor is ready.

Hunter back on CPAP

They said they wouldn't have to do it ever again.

He was on a special oxygen machine that would let him get more flow that normal. He wasn't supposed to go back on CPAP.

But it's for his own good.

During the conference we learned about the strain that was being put on Hunter's heart from the hard work that his lungs were doing. He is on medication for that, but in the meantime the best thing they can do is keep his oxygen saturations very high. Even though he was doing alright on the regular oxygen his saturation would drop below 90% often and that just was putting too much extra strain on his little body. They tried turning his oxygen all the way up, but he was still dropping under 95%. Once they got him back on CPAP he was easily staying above 95% and spending a lot of his resting time at 100%.

It sounds like if the pulmonary hypertension medication and the reflux treatment work as expected then his CPAP time should be very short.

Hunter's Conference

Yesterday we had our care conference with Hunter's doctor. Unfortunately, other than the chaplain, she was the only one there. One of Hunter's nurses was sick and the other was busy taking care of him. It was very nice to have some time to sit down and talk face-to-face with his doctor though, we haven't been able to do that for a while.

There were four major things that she covered: lungs, heart, reflux, and kidney stones.

Let's start with lungs. His lungs are not very healthy. As we already know, he is requiring large amounts of oxygen for a baby his age. He is still on 3 liters of oxygen, but is down to about 60%. Doctor said that her goal is to get him down to 1/2 liter at 100% before he comes home. If she can get him that low he can come home with oxygen. They are checking his lungs regularly to make sure he doesn't get an infection, but so far that hasn't been a problem.

There's not much to say about Hunter's heart, which makes me glad. The heart and lungs are closely related though, oxygen flows between the two so they can affect each other. In Hunter's case, his lungs are having a heck of a hard time, and it is causing some strain on his heart. The lower two ventricles of his heart are dilated. It's not anything they are too concerned about, they're just going to continue to watch it. Somehow this is causing the veins in his lungs to have higher blood pressure than normal. To treat the pulmonary hypertension he is getting an odd treatment - Viagra. Apparently Viagra's original use was to treat pulmonary hypertension and it's side effect became what it is best known for.

Reflux. It sounds like reflux is causing a lot of his problems, he has a pretty severe case. All babies spit up, but Hunter has a problem where he spits up and then inhales the formula and stomach acid into his lungs. They think that this could be causing a majority of his lung problems, too. To treat this they have moved his feeding tube past his stomach directly into his small intestine and he's receiving medication to reduce reflux and lower the potency of his stomach acid.

If this works and his lungs get better then they will know that is what is keeping his lungs from healing. If that's the case they will likely perform a small surgery to insert what they call a G Tube. A G tube is a tube that goes through the belly skin and is attached directly to the small intestine. There are pictures of the procedure all over the Internet, if anybody has a strong enough stomach to look it up.

He would have this procedure if the reflux is the only thing keeping him in the hospital. He would finally be able to come home, but there are many concerns about the procedure too. It would require general anesthesia and Hunter would have to be put back on a ventilator. It sounds like babies that are put on a ventilator for surgery have some trouble coming back off. Being fed through a tube can lead to "oral aversion" where the baby is no longer interested in being fed from a bottle.

There's not much that they can do about Hunter's kidney stones right now. They have ideas of what is causing it, but they can't do the test to be sure. There was a miscommunication between the lab in Chicago and Hunter's hospital. The lab requires 24 hours of urine (no less) to do the test, but a preservative needs to be added. The nurses didn't get the message about the preservative so the urine had to be thrown out. When they tried inserting another catheter his urethra was damaged. A urologist checked him out and said that everything would be fine but not to catheter him for a few weeks. Right now the kidney stones aren't doing any harm, so until he heals up and is ready to test again they are just going to keep an eye on him and make sure he's not in danger. They do have a specialist ready in case Hunter does require immediate treatment for his stones.

Lastly, he had an IV in his hand but it closed up. They tried to do it in his foot but that wouldn't work. Now he has an IV going into his head. Yeah, his head. Nurse says it's one of the best places for an IV even though it doesn't look so good. There are several nice big veins on the scalp and Hunter can't reach up there to pull it out.

Nurse says she thinks Hunter has blue eyes. With the sunlight shining on him in the picture it sure does look that way.

Care Conference

Today's the day. This afternoon we meet with Hunter's doctor and nurses for his care conference. I was starting to worry that it wouldn't happen in time - Hunter's brother and sister come back home tomorrow.

When Hunter first landed in the hospital, his doctor (Dr. Big Words, who we haven't seen in two months now) told us that the first few weeks would be exciting followed by days upon days of boring. Boy was he wrong. We've been fortunate enough to have a boring day here and there, and sometimes even several in a row. There have even been times that I've wondered What am I going to write about? But Hunter always manages to come through with something exciting to share with everyone.

Lately he had visits from an ear/nose/throat doctor and a pulmonologist to check up on his reflux and cloudy lungs. His reflux hasn't gone away, even without the bottle he is still managing to spit up. They are now making it even harder for him to have reflux. He had his reflux medication dosage increased and they moved the feeding tube past his stomach directly into his small intestine.

To save space, here's some other news:
He still has Chronic Lung Disease.
There is no planned time to do the urine test, that may change however.
He has one large stone in his right kidney, many small stones in his left.
I left my camera at home. :(

He's a Cutie

Hunter continues to grow. Last night he was up to 7 lbs, 11 oz. Even though he didn't gain any weight the night before, this gain is big enough to keep him on track for 2 oz per day.

Right now we're in one of those waiting times again. He still has an IV for his antibiotic, Nurse says it could be there for 2-7 days. I'd bet for the lower end since it's only precautionary and he doesn't actually have an infection.

There's no more blood in his pee, hooray! They are going to wait a little while before they try to do the urine collection again.

His oxygen is about the same. He's on 3 liters still, but the oxygen is turned down slightly to 72%. When we came in to visit him he was desaturating (the amount of oxygen in his blood was under 85%). This sets off alarms, which he doesn't like at all. All the babies in the NICU desat all the time so you are always hearing these alarms going off. It's not a big concern though because Hunter always gets himself back into a healthy range.

When Mommy and I were holding him, his respiratory rate and saturation improved again. He was breathing between 40-80 times per minute and he began to high sat (the amount of oxygen in his blood is over 95%). This also sets off an alarm, which he doesn't like at all.

Hunter is very popular in the NICU. Hunter only has one primary night time nurse, so we often have nurses who don't usually work with him. His primary night nurse loves the heck out of him though. Even the nurses who haven't worked with him before know who he is because "He's the baby that Night Nurse carries around and kisses on all the time."

Last night he had a different nurse. His primary night nurse was working, but just had other babies. In the time that we were there she came by three times to check on him and make googley faces at him. He's very lucky to have a great set of nurses who really care for him. I know his day nurses do, too.

Hunter's Hard Day

Yesterday Hunter had one of his hardest days in a while. Starting Sunday they began collecting his urine over a 24 hour period to try and determine the cause of his kidney stones. His catheter came out about half way through so they had to put it back in. And then after the 24 hours were up they sent it down to the lab only to find that they had messed up. They had forgotten to add a preservative to his urine, it was no longer "fresh" and they weren't able to test it.

Hunter now needs to go through another 24 hours of urine collection. They tried to start it yesterday, but something went wrong and he now has blood in his urine again. Nurse says it's most likely the catheter didn't go in right and scraped against his insides somewhere. They cannot collect the urine while there is blood in it, so they have to wait for that to stop and he was given another IV so he could begin receiving antibiotics (so his pee pee doesn't get infected).

He also received an ultrasound yesterday to take a look at the kidney stones, the only results I've heard regarding that is that he definitely has kidney stones. Nobody knows why yet. I did get to speak with Nurse more about the stones and she helped clear it up a bit. It is very rare for a baby to have kidney stones, I must have misunderstood Other Nurse when she said several babies had them. I also asked why they had to call a specialist for advice. She very kindly reminded me that they are a women's hospital, and they don't have specialists for that kind of thing in the building.

Along with all this excitement, Hunter was also moved back onto 3 liters of oxygen flow, and at 80% at that. This is pretty much a step back to the day he was taken off of CPAP.

Time for some good news. I was holding him, rocking with him, and singing to him last night. While I was doing this he was breathing very well. His rate stayed in the 30-60/minute range (good) and his oxygen saturation was up around 95-97% (very good).

What Happened?

Tonight Mommy and I went to visit Hunter and we found this. There was no baby at Station 8. There wasn't a name on the board. There wasn't even a card. Hunter disappeared.

Mommy and I looked at each other and exchanged looks of "What the heck?"

We found a nurse and asked what happened to our baby. We were told that he has a new home now. He has moved from one of the main stations to a private room. How luxurious.

Our nurse didn't explain to us why he was moved, just a mild amusement at the fact that we weren't told about it.

He's getting very big, he's up to 7 and a half pounds. We're ready for him to come home, we just need to wait... and wait... and wait.

No Big Changes

Hunter had an awesome day a few days ago, but since then he seems to just be relaxing.

His oxygen flow is still at 2 liters. That's good. The percentage is still pretty high though, and doesn't seem to be coming down at all. He's still getting around 80%. I don't know how low he will have to get that number before they change him back to 1 liter.

There's still no word on some of the other things happening. We don't know when his care conference will be. We don't know when they will try the bottle again. And we don't yet know what caused the kidney stones. They received the special test they need to do the kidney stone check the other day. Today they will be collecting his urine over 24 hours, then Monday they will test it. We should have the results by the end of the week.

Also, he is still gaining weight. Last night he was up to 7 lbs, 3 oz.

Hunter Makes Big Progress

Ever since Hunter came off of CPAP it seemed that he wasn't really making much progress towards getting better. Today he decided it was finally time to take that first step and I am very proud of him for it. His oxygen has been running at a high pressure (3 liters) ever since they put him back on it. Today they lowered it down to 2 liters and he is doing just fine.

When they turned that down they had to increase his oxygen percentage so he's up to around 75% - I'm sure that will start going down though. Today he spent some more time in his bouncer, he really enjoys that. Here are some random happenings:

Hunter weighs 7 lbs, 2 oz.
Hunter is wearing newborn-size diapers now, no more preemie.
They tried to feed him, but he started desaturating so still no bottle.
He is adorable and the nurses remind us of that every day.

So Much News pt. 2

It was late last night and I was ready for bed, so here's more of "So Much News."

The hospital is planning what they call a "Care Conference" for Hunter. They invite Mommy and I, his primary nurses, doctor, and regular specialists for a meeting to discuss his future at the hospital. When I spoke with Doctor that was how he described it, leaving me wondering "What is the purpose of this?" I was getting concerned that maybe they wanted to gently break some bad news to us, or tell us that he's going to be in the hospital FOREVER!

Later on I called Nurse to get clarification of what it is. She says that it is something they always do when a baby has been in there to his due date (today) and isn't ready to go home. The reason they get everyone together is so everybody can present how they've treated him. We also get the opportunity to ask any questions and have everybody who works with him available to answer. It also gives them the opportunity to discuss how to treat him in the near future. I guess doctors are pretty busy and they don't usually have the chance to all discuss these things together.

Anyway, Nurse says she anticipates this to have a positive turnout. She's been caring for Hunter several days a week since he was born and knows him very well.

So Much News

We already know Hunter has kidney stones. We learned more about it today. While it's normal for kids to have kidney stones it is very rare for baby at Hunter's age to have kidney stones. It's so rare in fact that Doctor, who has treated babies for decades, has never seen a baby his age with kidney stones.

I'm kind of confused, because last night Nurse said that they have several babies in the NICU that have kidney stones. Somehow Hunter's case is special. It sounds like Doctor had no idea how to handle this situation with Hunter. He said that he had to try to get in touch with some kidney stone experts. He talked to a doctor down at Riley Hospital and also one of the leading kidney stone doctors in the country in Chicago.

They had to get a special test from the doctor in Chicago that they are going to use for Hunter. Then they should know what caused it, and how to go about keeping it from happening again. Doctor said that they can usually treat it with medication or an adjusted diet. In rare cases it can require surgery, but we're going to try to avoid that.

Blood Work Again

So we now know that Hunter had kidney stones. That's what caused the blood in his urine the other day. They don't know what caused the kidney stones though so they are going to be doing a variety of tests to see. He will have some blood tests in the morning and they will collect his pee over the next 24 hours.

I was reading online and it sounds like kidney stones are pretty common in preemies, Nurse said that there are at least three other kids in the NICU who also have kidney stones. I don't know much about it, my main concern is whether or not is likely to happen again. Nurse said that she didn't know and that will depend on what caused it.

He is still on the IV and not on formula, but Nurse says that they will change him back over to his formula tomorrow. She also says that they will increase the size of his meal again. He's growing so fast - he doesn't fit into any of his preemie outfits any more. We brought in some bigger ones and Mommy donated his old outfits to the hospital to use for other preemies.

He is actually "due" in two days (Thursday). It's hard to imagine Mommy still being pregnant since Hunter has been with us for nearly three months now.

More Tests

Nurse found some blood in Hunter's urine. This isn't the first time, it happened a long time ago too and got better on it's own.

In the meantime they are taking precautions, he's back on an IV and he had some tummy x-rays. They were looking at his kidneys, but didn't find anything wrong. I don't know what they were looking for, we will get the official results today.

Nurse says that it's very likely that they'll be able to take him off of the IV today. Since they haven't been feeding him he lost a little bit of weight. He's down to 6lbs 15 oz which coincidentally is his brother's birth weight.

Giant Baby!

After a couple days of Hunter's weight not changing he has has several days of huge changes. The last time I posted a few days ago he was 6 and a half pounds, but today he is up to seven pounds. They are working on letting him grow and he sure it taking the opportunity.

Doctor increased his meals over the weekend and he is now getting 50ml over one hour which is a pretty significant change for Hunter.

He is still breathing way too fast to get a bottle. Nurse says they won't even try giving him a bottle if he is breathing over 80 times per minute. He is regularly between 80 and 100 now, but when he's asleep on his belly he drops down to 60. Now we just have to figure out how to give him a bottle while he is asleep on his belly.

There is still no plan of when to start the bottle, I ask every time I talk to a nurse and I always get the same answer, "When he's ready." Today his nurse estimated that he'll probably be in there for another four weeks. Oddly enough, about a week ago another nurse said the same thing. We should all know by now though that the estimations don't mean much because everything can change over a day.

Eat Faster, Hunter

Hunter sure is getting big. Just recently he passed six and a half pounds, a whole four pounds since he was born.

His feedings are still the same size, 45 ml (one and a half ounces) every three hours. There is a good change they made today though. To help with his reflux they've been giving him his meals over two hours, but with only a one hour break between feeding times he wasn't getting a lot of time to digest his food. Today they decreased his time down to one hour. We'll see if he is still able to eat as much food in half of the time without having reflux problems.

I seem to be getting different stories from different nurses regarding when they are going to try a bottle again. His nurse last night said "3 days," his nurse today said "I don't know, he's doing pretty good though," and his night nurse said "Doctor didn't write any plans for that."

Hmmm.... someone's not communicating the news that I want to hear to all of the nurses.

His hair looks darker in the picture than it really is. I notice in the picture it seems to have some red, too. Maybe he got that from Mommy. I'm trying to guess what color his eyes will be. Right now they are gray, but the color should start coming through in the next few months.

Besides all of that, we're just waiting. They haven't been able to wean him off the oxygen at all, but both of his nurses today did say that he is being very happy laying on his belly (he has always preferred that.) Of course we aren't allowed to do that once he gets home, but at the hospital it's okay since he is covered with monitors. They're very cautious about SIDS, they actually had to get a doctor's order to allow him to sleep on his belly since he could breathe easier that way.

Growing Boy

It sounds like Hunter is making some pretty big steps. Yesterday his breathing rate seemed much more stable while I was visiting him. He did some times get over 100 breaths/min but most of the time he seemed to be right where they want him to be (around 70).

Doctor must have noticed this too, because he is now planning on starting bottle feedings in two days. If all goes well with the bottle feedings hopefully we'll be able to take some time off of the four weeks that Nurse estimated the other day.

Hunter's Swallow Study

Yesterday Hunter had his swallow study. The immediate results showed that he did have some trouble eating. They found that he will require very thick formula (about the thickness of honey) once he is able to get back on a bottle.

It's going to be a while before they try to get him on the bottle. Right now he is on a high flow nasal cannula which has a flow of 3 liters. Nurse says that they should get that down to 2 liters before they give the bottle another try. The high flow of his oxygen is blowing air into his belly, if they try to feed him now it will just make the aspirations worse. Then when he is able to take a bottle they will start with very small feedings (5 ml) and increase them over time until they can do a full meal (45 ml) from the bottle.

If this all sounds like it's going to take a while, you are right. Tonight, Nurse estimated that optimistically we should expect Hunter to be in the hospital for at least four more weeks. He's been in the hospital for 11 weeks now, so I guess another four isn't so much.

March of Dimes walk

Hi everybody! It's Caity. I wanted to share with you what me and my friends Erikka & Michael are going to be doing for the March of Dimes this year...

As all of you know my son Hunter was born at 27 weeks gestation, about 3 months too soon. He weighed 2lbs 8oz and 14 inches long. He has been staying in the NICU for the past 2 1/2 months. They do a wonderful job there! Without the help of the neonatologists, nurses, and all the equipment things might not be progressing forward as they are. He is now 2 1/2 months old and is over 6lbs! He also has friend named Lauren who was born at 28 weeks age gestation, she is 9 months old now and growing like a weed! Her mommy and I have been friends for a very long time and have been able to talk to each other about life in the NICU.

There is a wonderful organization called the March of Dimes and they do many wonderful things to help preemies survive. Every year in the Spring they have a walk to raise money and awareness for preemies. I am writing all of you to ask you to join myself, and my wonderful friends Erikka & Michael in the walk for the March of Dimes. The walk will be April 26th at 9:30 am and it will begin at Coveleski Stadium in South Bend. It would be greatly appreciated if we can get an over whelming number of people to join us. However if you are unable to join us in the walk, please make a donation to the March of Dimes in Hunter & Lauren's name. To join us please go to www.MarchforBabies.com and when searching for a team to join, we are TEAM LINSKY.

My personal page to make donations is
http://www.marchforbabies.org/caitys3lilones

Erikka and Michael's personal page is
http://www.marchforbabies.org/emlinsky

Thank you!

High Pressure

We hear from the nurses that Hunter will never ever have to go back on CPAP. That doesn't mean he's out of the woods yet though, they are still concerned about his breathing. Whatever they do, they will be able to keep him on the nasal cannula. Over the weekend they had a special machine on reserve that would allow them to give him higher pressure (like the CPAP) but in a gentle way (like the regular oxygen).

Doctor became concerned about Hunter's fast breathing today and decided to switch him over to the high-volume device. From what I gather from the Doctor has said, CPAP delivered about 5 liters of air. The regular cannula delivers 1 liter, but this new device will allow them to give him 3 liters without having to worry about how it will affect his body. The plan is to work him down from 3 liters.

I'm wondering if they will be able to do the swallow study since that will require Hunter to take a bottle. If his breathing rate doesn't come down I don't know how they'll have him do it. We'll find out more about it tomorrow.

Try it Again

Yay! They took Hunter off of CPAP!

It sounds like everything went very smoothly. Nurse told me that when they first took it off he started breathing fast and they were concerned about that, but after a while he adjusted and started slowing down. When I visited him I noticed that his respiratory rate was still very inconsistent. There would be times that he would have 30 breaths/min and also times that it would jump over 120.

We need him to keep his rate down so they can work on getting him back on a bottle. They can't feed him when he's breathing so fast, just imagine trying to drink while you're take two breaths every second.

He is still scheduled for his swallow test. After they do the test and find out what consistency formula he needs they should be able to use a bottle pretty much every time he eats. Mommy and I are very excited about that, we haven't had the opportunity to feed him yet.

Waiting for Tomorrow

I don't have anything new to report today. We're all just waiting somewhat patiently for tomorrow. In case anybody missed it, tomorrow is the big day that they will try to take him off of CPAP again.

It sounds like they are NOT going to go back to their plan of leaving his oxygen at 100%. Right now he is around 30% and Doctor said that when they take him off CPAP it will likely go up. But he didn't say 100%, so we'll find out what that means tomorrow when they actually do it.

He is scheduled for a swallow test on Monday to determine if he is coordinated enough to eat regular formula. Doctor did say however that if he is acting like he is ready for a bottle they may try to give him one before then anyway.

We're all very eager for him to come home. At the same time though, home is so dangerous. While he is in the hospital he is generally safe from germs and toddler siblings. Once he comes home everything is going to be out to get him. Gavin has a cough that he just can't seem to shake, its been coming and going for at least a month. I know Mommy would be very nervous to have a coughing Gavin anywhere near Hunter. We're working extra-hard to make sure everyone is healthy for whenever they decide to let Hunter go.

There's a Plan

Hunter's weight: 6 lbs, 4 oz.

Hunter has gained 5 oz since the last time I posted. He is getting much bigger, but still seems so small. It's easy to see that he is gaining weight, he is definitely getting chunky. I was poking at his fat little cheeks this evening... he didn't like it much.

He's been doing very good with his CPAP. They've been able to keep his oxygen requirements in the low 30s or high 20s, which is pretty average for him. Doctor thinks that he is doing so well that they will try to take it off again. Right now the plan is to take it off on Friday, then do the swallow test.

Hunter may soon be able to get back on a bottle. His feedings haven't changed in a long time, he is still getting 45 ml over 2 hours. I'm wondering what's going to happen when he does get back on a bottle and he's getting 45 ml over 30 min. I guess we'll see shortly.

Almost Six Pounds

Can you believe it?! As of last night Hunter weights 5 lbs and 15 oz. If he can gain that extra ounce tonight he'll be six pounds.

I was just at the hospital holding him and he doesn't even feel like the baby he was the first time we were able to hold him. I remember the first time holding him he didn't even fit into his preemie outfits. No matter how we held him he would just slide down to the bottom of his outfit and get scrunched into a baby-ball. Today he seems much more solid, even though he is only the size of a small newborn.

There are things we're able to do now that they didn't recommend doing when he was first born. We don't need to be as cautious about touching him. Preemies have sensitive and confused nervous systems and any sort of stroking is irritating or painful. Today I was able to hold his hand and play with his little fingers and he didn't mind one bit.

He's still on CPAP, Doctor says he will probably still be for 5-7 more days. After they take him off CPAP they are going to do another swallow study. Doctor thinks he may have another small problem other than the reflux, he may not have the coordination required to swallow. This can cause some of the formula to enter the lungs in the same way as the reflux. If he does need some help, all they do is thicken his formula until he grows and gains the coordination he requires.

All The Same

There's not much new going on with Hunter these past few days. He is still on CPAP, still NOT getting a bottle, and still not at home with us.

The nurses and doctors never don't very positive about the CPAP, they always comment on how they want to see him off of it. They just don't feel that he's ready for it right now. Last night when I was talking to Nurse she told me what their concerns are. Hunter does just fine while he's on CPAP, but when he comes off he ends up using so many calories trying to breathe. They think that if they take him off CPAP he will end up losing weight since it's hard work for him to breathe.

It's been ten weeks now since Hunter has been born, and he has yet to come home. It's odd not having a member of our family ever be at home with us. Several weeks ago we could go visit him every day, but now with the kids home and a job taking up most of the day it's become much more difficult.

He needs to come home.

Getting Bigger

Not too much happening with Hunter. Over the weekend he has just been working on gaining weight, and boy had he been doing that. He was weighed tonight and he is up to a huge 5 lbs, 11.5 oz. He's getting so big, I'll be its because they've increased his meals quite a bit. He was at 40ml for a long time, but just a few days ago it was increased to 45ml.

Nurse made it sound like it may be on CPAP for a while longer. It depends on who his doctor is since they make the end decision. It's possible they may take him off as soon as tomorrow, but even when I was visiting him his O2 requirements were pretty high. His oxygen was up to 35% and he was still desaturating. Unless his requirements go down fast I don't think they'll be doing much.

He's Trying So Hard

Since they found out yesterday that Hunter has reflux they know how to treat him. The plan was to start him on his medication and remove CPAP at least 24 hours later. I guess they got a little eager, or maybe just wanted to do it while the doctors were all there, but they took CPAP off earlier today (hooray!).

Fast forward a little while and Hunter start breathing very heavy. Doctor decides that this is no good so guess what - Hunter goes back on CPAP. This is his fourth time on CPAP, and his oxygen requirements have been fluctuating between 60% and 30%. He's had a pretty rough day, because of this he has lost a little bit of weight (only 15 grams) and his O2 requirements are a little high.

They don't have any plans of trying to take him off of CPAP again yet, I bet he won't be on it very long though. I have a feeling that once the medicine kicks in and his lungs clear up more he will be done. It's a bummer that he had to come back to CPAP again, but I kind of expected it. We were pretty surprised to hear that they took it off so soon.

Reflux

Hunter had his Upper G.I. test today to determine whether or not he had reflux. Nobody is surprised by the results, yes he does have reflux.

It's good that they figured this out, because CPAP doesn't treat this, fortunately they have medicine that does. They started him on the medicine today and if he stops breathing so hard they may remove him from CPAP as early as tomorrow.

It's very likely that Hunter will come home with this reflux medication. It also sounds very likely that he will come home with oxygen. We can handle that though, at least he will be able to come home. Doctor said that sometimes babies only need oxygen and medicine for a month or two, but other times it can go on for a long time. They don't answer anything absolutely, its always "it depends".

In the case that Hunter does come home on oxygen they want us to be ready for it. To help parents adjust they want Mommys and Daddys to spend the night in the hospital once with their baby. There are small bedrooms in the NICU where we would get to spend time with Hunter without nurses and doctors always walking around, but they would be right outside the door just in case we needed them.

It sounds like everyone is eager for Hunter to come home, now we should be able to count his time left in weeks instead of months.

Happy Hunter

Hunter's Weight: 5 lbs, 7 oz.

Hunter's nurses have noticed that he seems to be getting bored with his crib. Yesterday Nurse suggested that we should bring in a bouncer seat for him. Now he can sit up and look around, and that's exactly what he is doing. He was more active today than I remember seeing him before. He was sitting in his bouncer and looking all over the place while swinging his hands back and forth.

He is still on CPAP, the pictures from yesterday were taken when they were cleaning him. Yesterday they had disconnected him from everything for a short time, no CPAP, feeding tube, or chest sensors. After being off of CPAP for a few minutes his saturation went way down and they had to hurry to get it back on.

Tomorrow they will have to remove the CPAP for a little while because they are going to do his swallow test. They need to determine if he can eat properly, but he can't eat with all that air blowing down his nose. Nurse said that if it turns out that it is a reflux problem he will likely be coming off of CPAP soon and will just be treated by medication. She also said that most babies have reflux and that he should be much better by the time he comes home.

Photo Update

Hunter weighs 5 lbs, 4.5 oz.

Not a lot of other new news for today so I'm going to share some pictures.

Doctor Explains It

Hunter's Weight: 5 lbs, 4 oz.

Today I was able to talk to Doctor and he explained everything that happened and why he chose to put Hunter back on CPAP. Here's what he said.

The night before he was returned to CPAP the nurse had reported that he was breathing hard. Then the following day he didn't show any interest in eating. When they would try to feed him he would spit it up. Nurse told his doctor about this and they decided to put him on CPAP. At the same time, Doctor ordered an x-ray of his chest. After looking at the x-ray they found that his lungs were cloudy again (like pneumonia) so Doctor did a blood test to make sure everything was okay. The blood test showed no infection (whew, thats a relief) and they figure that he is doing the "silent reflux" i wrote about a while ago where he spits up and then inhales it into his lungs. All of that liquid can collapse parts of his lungs so the CPAP just helps keep his lungs open until they can remedy the situation.

Doctor said they are going to do some fancy tests to determine how coordinated his throat is and decide how severe his reflux is. A difficult part of this test is that he has to be able to eat from a bottle to do the test. But he cannot take a botle while on CPAP. But the CPAP is what is keeping this from getting worse. It's a difficult circle, I'm just glad I'm not a doctor who has to figure all of this out.

Doesn't Seem Right

Take a good look at the picture. Something just doesn't seem right. Maybe something is missing. Maybe something is there that isn't supposed to be.

Have you found it yet?

If you guessed "Hunter is on CPAP again" you are correct.

His nurse today noticed that his saturation was not so good, and it really dropped after feeding him. So after his meal today she talked to Doctor and they decided that it would be best for Hunter to go on CPAP again. This is his third time. It doesn't sound like he was in an awful condition that forced him back onto CPAP, only that he was getting tired again.

Since we weren't able to go in to visit him for quite a while we missed the entire time he was off of CPAP. He seemed very excited to have us back, I noticed him squirm when he heard my voice, and Nurse said he did the same thing for Mommy.

Because he's back on CPAP now he won't be getting any more bottles. Mommy and I were really looking forward to feeding him sometime, but now it looks like we're going to have to wait a few more days.

Hunter is So Cute, or So I Hear

Hunter's nurse says that he is getting so darn cute. I have to take her word for it, we've not been able to visit him for a week now. Everybody is feeling better today though so our plan is to visit Mr. Hunter tomorrow. We've been missing him very much, but it's better that we stay away and not take the chance of getting him sick. He is finally making progress everywhere and we would not want to risk that.

Nurse weighed him tonight and was able to give me some VERY exciting news. Hunter weighs five pounds now. Yep, five whole pounds. He is now officially double his birth weight. She also said that she gave him a bottle already tonight and he took nearly half of it.

Today Hunter's corrected age is 36 weeks. That means that he could be born any time over the next four weeks.

He also had his x-ray today and they saw that his lungs were clearing up with the medication that he is already on. So for now they aren't changing him over to any reflux medicine.

Go Hunter!

A Little More Information

We haven't heard of many changes with Hunter today, but I did manage to get a little more information about the tests they are planning for him.

Tomorrow he will be receiving another x-ray to see if the medication he's on is helping clear out his lungs. If it is still cloudy after his x-ray they will put him on Prilosec to help with his reflux. I didn't understand how reflux could cause cloudy lungs, but Nurse was kind enough to explain it to me.

Almost all babies have some kind of reflux, most babies just spit up. Some babies have a kind of reflux they call "silent reflux" where the baby has reflux but doesn't actually spit up. What they think may be happening with Hunter is that he is spitting up but the milk isn't coming out. Instead, he is inhaling it and getting it into his lungs. This can cause the cloudiness and symptoms similar to pneumonia even though there is no infection.

He is still eating well from his bottle. Today Doctor increased his meals to 40 ml, and today he took 30 ml through the bottle before giving up. It sounds like everything is going pretty well with Hunter. He just has a few hurdles to overcome before we can start thinking about when we can bring him home (it's not far off, though).

Feeding Adventures

Hunter's Weight: 4 lbs, 13 oz

Hunter is so awesome. He took his entire meal by bottle tonight. They didn't have to put any of it down his tube.

This is very good news. Yesterday we heard from Nurse that Hunter has been having some problems while eating. It sounds like he's choking a little bit while they're feeding him. Nurse says that it's likely reflux and they will get him some Prilosec to help reduce any reflux and help him eat better. She said even today when he took his entire bottle he still choked a little bit.

Reflux in preemies isn't a big deal and they usually grow out of it. I asked Nurse if it was anything to be concerned about. Her answer was no, but they think it may be some other things that they are going to test for. She didn't go into detail about the tests, I'll try to find information about those over the next few days.

Too Much News

We haven't been able to see Hunter since last Friday morning. Over the last few days everybody has been getting the flu, one at a time. So now we aren't allowed back in the NICU until Thursday. That's going to be nearly a week without seeing Hunter.

We have been in contact with his nurses though, so at least we're able to keep up to date on how he's doing. A few hours after we left on Friday they did take him off of CPAP and we're hoping that he is done with it forever. He also had his first bottle that same day. He did very well with the bottle, he took half of his meal through the bottle and had to have the rest of it down the tube.

When he came off of CPAP they had him at a high pressure. Usually they try to wean the pressure down before they take babies off of CPAP. Hunter had some trouble adjusting to the lower pressure of being on only oxygen. Doctor said that his oxygen requirements were still fluctuating too much. To help him adjust to the pressure change they doubled the pressure of his oxygen, but it's not healthy to do that for too long so they only did that for 24 hours.

Now they're trying something completely different, they are keeping his oxygen flow at 100% and they are going to try to wean the pressure down to a point where they can hopefully take it off. In the case that they can't take it off at least they'll be able to send him home with oxygen and an idea of how much his body requires. As of last night they are a little concerned because the oxygen in his body is still dropping at times and that should not be happening when he's receiving full oxygen.

Doctor ordered an x-ray of his chest and they found that his lungs are still cloudy. That means there is still some extra fluid in there that is probably making it harder for him to breathe efficiently. I think they're going to give him a medication for that but in case it doesn't help they do have some other ideas.