Hunter's Quick Recovery

Hunter seems much healthier today. He is still on CPAP and he is still in his isolette, but he seems very comfortable. They still haven't found any infections, Doctor is betting that Hunter just wore himself out. It sounds like they are going to leave him on CPAP for a few more days before trying to take it off again.

There aren't many changes. Because of his move back to CPAP they haven't increased the amount of food that they give him and they can't add any more calories. They did give him that blood transfusion they had been talking about. They had to take an awful lot of blood to do the blood culture and the complete blood test. I think that's the only reason they had to do the transfusion. The tests before that showed that he has been producing enough on his own to stay healthy. Either way though, he seems a lot happier now that he has richer blood.

I don't think Hunter likes being on the CPAP at all. Today while we were visiting he grabbed onto it and pulled it right off - his velcro mustache and all. I noticed his oxygen saturation going way down so I went to check on him and he had moved the whole thing from under his nose up onto the bridge of his nose. He's a strong little boy.

We Should've Known

Hunter looks like an alien baby today.

Hunter's Weight: 3 lbs, 14 oz.
Hunter's been doing very well and continuing to get better every day. All of this hard work must have left him exhausted. Today he just couldn't seem to keep his breathing stable. While we were visiting today we saw his respiratory rate jumping from 30/min up to 150/min in a matter of seconds, 50-70 is what they want. He was also having trouble keeping his oxygen stable, they want his oxygen saturation above 80% but he was consistently dropping into the 60s and 50s. On the opposite end his oxygen requirements were jumping all the way up to 70% which is way over room air (room air is 21% oxygen).

When Doctor saw all of this happening he decided it was time to jump in. They moved Hunter back onto CPAP to give his lungs some rest, and also did some blood tests to make sure he didn't have another infection. The immediate results showed everything being normal, but it will still be a day or two before we know for sure if he has an infection.

After they put him on CPAP his breathing improved immediately. He was no longer desaturating (in fact it was getting too high), and his requirements dropped from 70% all the way down to 30%. As a part of being on CPAP he had to be moved back into his isolette, so he's back in his box again. It's only a small step back, we're hoping he just needed some rest and this isn't being caused by an infection.

Chronic Lung Disease Strikes Again

Don't let the subject fool you, Hunter is doing very well. He is eating well and gaining weight. He is recovering from his jaundice (it's a long treatment), and is generally doing fine. However, Doctor is becoming a little concerned that his oxygen requirement has stayed too high for too long.

While we were visiting today they had his oxygen level between 50 and 60 percent, which is nearly three times normal room air. On top of that, any activity seems to raise his requirements. When they feed him, or change his diaper, or hold him, they've found that they have to turn his oxygen up to keep him at a good saturation.

Doctor ordered Hunter an x-ray and found that his lungs are a little hazy again. He says that this means that there is some fluid in his lungs again, but not pneumonia. As a first step they are giving him a medicine that will help him pee more and hopefully get any extra fluid out of his body. This will take 48 hours to take effect so we'll find out how he's doing in a few days.

Mommy and I can't help but be afraid that this could turn out to be something bad again. Nurse said it isn't anything to worry about, but her tone of voice made it sound as though we shouldn't let our guard down. For the next to days we're going to wait (as patiently as we can) to see how he responds to the treatment.

Hunter Leaves His Incubator

Today was an absolutely wonderful day for our little Hunter. I guess technically it was last night, but we didn't see until today so I'm going to say today. Hunter was moved out of his isolette and into a regular baby crib! Now we can walk right up to him, see him, touch him, and pick him up without asking the nurse to get him out of his bed.

Nurse said that last night shortly after we left they took his temperature and it was a little bit high (not like a fever though). His incubator had already been set at the lowest temperature so they decided to try him without it. So far he is doing wonderful in there, it's so different being able to just reach out and hold his little hands. Oh those little hands, they are so adorable and cause so much trouble. He likes to sneak his fingers up around his cannula and pull it right out of his nose. I had to yell at him several times while we were there earlier today, "Hunter! That's a no-no!"

To make sure that he's able to keep his weight up they are adding 30 calories to each meal now. Doctor says thats the maximum they can do, and rarely go above 27. He increased it a little bit since Hunter's weight gain seems to have hit a plateau right over the 3 1/2 lb mark. Last I heard he was at 3 lbs, 13 oz.

Doctor who saw him today hasn't seen him in three weeks, so he was pleasantly surprised to see how much he has changed over this time. Around the last time he had Hunter we were talking a lot about Chronic Lung Disease, so I figured I'd ask him for an update. Doctor says he thinks Hunter will have a "mild to moderate" case, and he should have no trouble getting through it.

Hunter's Neighbors Go Home

Mommy and I went to visit Hunter today, as usual. And we both had the opportunity to hold him, as usual. He did pretty well with Mommy but did not seem very interested in siting with me. When it was my turn to hold him he kept dropping his oxygen and heart rate, so after a little while I had to put him back in his bed. Once he was back in his bed he was happy again.

Doctor is still talking about starting him on the bottle, the only thing holding him back is that he is breathing a little bit too fast. Nurse said the same thing, she feels that he's almost ready since he seems so coordinated with his pacifier.

A few days ago I wrote that Hunter's baby neighbors were getting ready to go home. One of them was able to leave yesterday, and his other neighbor was able to leave today. The parents sure seemed happy to be able to finally bring their baby home. Now Hunter is the last baby in his area, but I'm sure new babies will be coming in soon and he'll be making new friends.

Hunter Likes the Colts

When we went to visit Hunter today we noticed that they had put him on blankets covered with the logo for the Indianapolis Colts. Mommy was very quick to point it out, as she is very tired of hearing about them all the time. I guess that little Hunter wanted to pick a little bit at Mommy and remind us that even though he's in the hospital he can still make Mommy growl.

Hunter still hasn't been having many changes. His feedings have finally begun increasing again, he's now getting 32 ml. He is also gaining weight again. After a few days of small decreases he is back slightly above his old weight at 3 lbs 11.5 oz.

We got to spend some time talking to Nurse today, she says that she very soon expects the doctors to say they can begin the bottle whenever they think he's ready. Today's nurse told us that if it were up to her she would wait a while longer, about a week. She made a very good point when she said that "he's not even supposed to be out yet." She is admittedly conservative though, I think some of his other nurses might push to try it a bit sooner.

With all of the excitement of coming off of CPAP I think I forgot to write that they are no longer doing regular blood tests on Hunter. At one point they were doing at least 4 a day, then they dropped down to one per shift, then one per day, and now - none. I'm sure Hunter is happy about that, his little foot has done it's fair share of bleeding by now. Hunter is supposed to be getting one more blood transfusion in a few days, Nurse says it's likely to be his last one.

Boring Day

Today has definitely been one of Hunter's boring days. But remember, boring is good.

Hunter is still breathing without the help of CPAP. Nurse reminded us today that it's very possible that he may have to go back on CPAP, many babies do. The way she said it made it sound as if she knew he was on the way back to CPAP and wanted us to be prepared. While we visited today his oxygen was dropping down quite a bit. Hopefully he'll be able to keep his oxygen up overnight and convince the nurses and doctors to keep him off of CPAP.

Because of his varying oxygen requirements there weren't many other changes. They have been talking about trying him with a bottle and moving him to a crib. They didn't do either of these today though because of his oxygen issues, maybe in a few more days.

He lost some weight again, Nurse said it wasn't more than an ounce. His weight has been going down lately, but they aren't too concerned. Nurse said it may just be some swelling going down. His feeding size hasn't changed, but they did increase his calories again. His calories were at 24, they are now at 27, and they can do a maximum of 30. Nurse says this should help him gain weight real good.

Oh, and Mommy got a haircut, it's sassy.

It's totally up to Hunter now

What is totally up to Hunter now you ask? Well, it's his breathing! That's right, earlier today the nurses and the doctors decided that he was doing well enough to be moved from CPAP to the nasal cannula! He is doing just as fine on the nasal cannula as he was on CPAP. Also, now that he isn't on the CPAP anymore, that means his little face won't be scrunched up like a little bulldog anymore!

He is also getting another eye exam today to check to see if he is getting ROP. Hopefully that will come back fine, we'll know by later today what the results of the exam were.

I know I wrote this last time, and Bobby didn't write anything, but Bobby will get on a little later to post an update for the results of the eye exam and what not!

Bobby's Update:
Hunter made it through the entire day without having to go back to CPAP. Doctor did say, however, that it is very possible he may tire out and have to return to CPAP for a short time.

If Hunter is able to make it a few days without going back to CPAP they are going to try to start feeding him with a bottle. Babies typically are ready for a bottle at 34 weeks, Hunter just turned 33. His doctor says that sometimes babies are ready to take a bottle at 33 weeks and that Hunter may be since he has been doing so well with his pacifier.

His eye exam came out fine again this time. He had one a week ago that also came out fine, he doesn't have to see the ophthalmologist again for another two weeks now. The picture is a little dark today because they had to dilate his eyes for the exam and I didn't want to bother him with a flash or by opening up his bed to the light. I think he's smiling at me.

Also, his nurse tonight said she might put Hunter into a crib! She said that he is old enough & big enough to make the transition. She said if he doesn't get too fussy she'll do it tonight, if he does get fussy they'll probably do it tomorrow! Yay for Hunter!

Almost Done with CPAP?

Good news. It sounds like Hunter will be coming off of CPAP soon. He's been making good progress while on it. His oxygen has stayed in a good range and they've been able to turn the CPAP down to a point where it's ready to come off. Today we got to talk to his respiratory therapist, she said that they usually don't turn it down any further than he is right now. The word on the street is that they may try to pull it off on Friday.

He has been creeping his feedings up a few ml every day and today he finally hit 30 ml (one whole ounce). He is now half way to a full-term newborns meal. I don't know how they will ever get him up to two ounces, the milk they give him now seems like so much compared to his little body. It's hard to believe that it all fits in his belly, but I've watched them do it so I know that it does.

Yesterday Doctor mentioned that his weight had gone up a lot, but I forgot to ask how much. Today I remembered to ask Nurse about that and she said that he is at 3 lbs, 11 oz. I guess that if he did go up yesterday he made sure to come back down, because this is about where his weight has been lately.

Lastly, if you look at today's picture and pay special attention to the arm he is holding up you may notice that something is missing. What could it be?... You guessed it, they removed his PICC line yesterday. We already knew they were going to do it, but they didn't pull it until after we left yesterday so today was our first time seeing it. Hunter is needle-free.

No More Needles

Hunter is still making wonderful progress. It's been great to be able to have so many days with good news to share.

It looks like a lot of his baby neighbors are getting ready to go home. Some of his friends who have been in the NICU with him since he was born have car seats waiting for them and will be leaving soon. I'm happy to see other babies being able to go home, it definitely makes us feel a bit more anxious to be able to take Hunter home. It seems that every time we see a baby leave either Mommy or I comment on how someday it will be us with the car seat.

Hunter is doing very well on CPAP. He has been able to keep his oxygen well under 30%, this makes his doctor think that he will be ready to come off soon. We spoke with Doctor today and he said that they may try to make the transition off of CPAP towards the end of the week. I'm sure Hunter is eager for that. His nurses have all said that most babies dislike CPAP, but I'd bet that it's not as bad as being on that ventilator or oscillator that he was on for so long.

He is also eating very well. They didn't make any changes to his food today, he is still at 28 ml every three hours. His meals are creeping their way up to the one ounce mark. Doctor ordered his milk to be fortified with extra calories to help him gain more weight. He said the reason he didn't make any changes today is due to his weight going way up overnight. I forgot to ask what his weight is right now (I'll save that for tomorrow) but I figure that means that whatever they're doing is working.

Doctor took Hunter off of TPN yesterday but left the PICC in his arm with plans of taking it out a while later. He was originally planning on doing it tomorrow morning but there's a potential problem with PICC lines that can and did show up. When a PICC line is empty there is a chance of it closing up, and guess what, that's exactly what it did. Since it was of no use any more they said they were going to remove it today. That means that Hunter has no more needles sticking into him!

Daddy Holds Hunter

I got to hold Hunter today. He feels so much smaller than he looks. It was wonderful, he spent the whole time making silly faces and sticking his tongue at me. Nurse had him wrapped in several blankets which together are probably as big as he is.

Hunter is doing very well. Doctor said that we are getting to the point where there shouldn't be much happening on a daily basis. There will hopefully be many boring days ahead. Even though Doctor thinks upcoming days will be boring, there are still many milestones that Mommy and I are looking forward to.

For example, today Hunter's TPN expired. Hunter has been on TPN since birth, but at 4 p.m. it officially expired so they took it off. This is a big milestone because it means that he is getting all of his nutrition from the milk. If he can keep getting his nutrition from milk they will be able to remove his PICC line in a day or two. Once the PICC comes out he will have no more needles.

Also on the topic of milk, they have begun fortifying his milk with calcium and other vitamins. Doctor says they need to do this because babies normally develop their bones during the third trimester and Hunter is missing out on this. A few days ago Doctor explained how fragile Hunter's bones are, apparently it's not uncommon to find preemies with fractured bones caused by their regular care.

He is also doing very well on CPAP. He has adjusted to it and his oxygen requirements have come way down. When Mommy and I got to the hospital today his oxygen was turned to only 23% (only 2% over regular air). Over this last week Hunter has made so many huge changes he seems like a completely different little boy. He still has big milestones ahead though.

Holding Hunter

After anxiously waiting for a month, the day that I would be able to hold Hunter finally arrived. It was a very wonderful experience. Even though I had held Alyssa & Gavin as babies, holding Hunter was a whole new encounter. When you look at him while he is in the incubator, he looks big. Not huge by any means, but big enough to look like he is running out of space in there. When you hold him though, you really realize how tiny & lightweight he really is.

On other news, he is up to 26ml on his feedings. He has been on a steady increase for the last week. The doctor has also mentioned eliminating his TPN and eventually removing his PICC line. Even when they stop his TPN they will keep the PICC line in for a little while in case they would need it again. They usually will run just a sugar solution through it for a couple days to keep it open.

All in all Hunter has had a pretty good week. The doctor that he had this week made it her mission to get him caught up to where she thought he should be at this point and he was more than willing to cooperate. I just hope that things continue to progress forward for him. He is a strong little man.

Hunter's CPAP Update

Hunter's Weight: 3 lbs 10 oz
Hunter's Length: 17 inches

The last two days have been very exciting. Yesterday, Doctor decided that Hunter was doing well enough on the ventilator to change over to CPAP. GO HUNTER!

This is a huge change for Hunter as it is the first time he has been responsible for his own breathing. Up until now there have been machines to either do all of his breathing or as a backup in case he isn't able to keep up. As of yesterday around 2 p.m. Hunter is now expected to do it all on his own.

Now that he is on CPAP we should be able to hold him soon. They still want us to wait a little while because he is still adjusting to this big change. He did well all through the night and all of today, so hopefully by tomorrow we will be able to get him out of his bed. The reason that they advise against us holding him right now is that he isn't doing so well when he's being handled. When Nurse was doing a blood test Hunter started crying (as best he can) and his oxygen plummeted and his face started turning purple.

Overall he is doing great. After making this change to CPAP his oxygen requirements have been a little higher. Before the change they were trying to keep him below 30% oxygen, now he is around 38% but Nurse says that is an expected jump and it will settle back down over time.

Hunter is also doing very well on his feeding. They have him up to 22 ml. He's getting a majority of his nutrition from his milk now. Since he is doing so well they were able to remove his lipids (fats) from his IV. Right now his TPN (yellow nutrition bag) is turned as low as it can go and it sounds like they'll be taking that off any day now. Once they do that he will be getting all of his nutrition from his milk.

A lot of people in the NICU have worked with Hunter at some point while he's been in there. Many of the nurses and doctors had been with him while he was sick or during his rough early days. As he was getting put on the CPAP the nurses or doctors walking by would smile and comment on the progress that he's made, even those who haven't directly worked with him. It seemed that everyone in the NICU was excited to see little Hunter doing so well.

Hunter on CPAP :)

Hi everyone, it's Caity again! I just wanted to post some pictures of today's big event of Hunter going from the conventional vent to CPAP! Bobby will be on later after our next trip to the hospital to post the daily update!

She Said "48 Hours"

Mommy and I just got back from a trip to visit our little Hunter. I was especially anxious for this trip. Earlier in the day we had visited and received the regular updates, but we were also told that he was going to get his first vision test today.

During his vision test they were going to check for something called Retinopathy of Prematurity (ROP). The eye is one of the last things to mature in a full term baby. ROP can lead to poor vision, blindness, crossed eyes, or a lazy eye. It sounds quite scary so I was very eager to hear the results from Nurse. Before everybody starts panicking - he's okay. They found no signs of ROP, but he has to have another test in a week as it can develop at any time within the first few months.

The scary news it out of the way now. Time for some good news. Hunter is eating more again, he's up to 20 ml. Doctor said that his TPN is at minimal settings and that nearly all of his nutrition is coming from the milk. This means that he is using his intestines, and he is pooping all on his own!

They've also turned his breath rate down further on his ventilator. He's now at 30 breaths per minute; the whole time we were visiting with him he was doing over 30 so he's doing a lot of breathing on his own.

This morning Doctor started him on caffeine to give his lungs some extra exercise, and we heard through the grapevine that she may try to remove him from the vent in 48 hours. Now that's some real good news. The 48 hours started this morning so if everything goes well he may be in for a big change this Saturday morning.

There's so much to write about today, but I don't want to take up much more space so here's a quick rundown of whats left:

We saw them change his mask today and got to see the bottom half of his face for the first time. Hunter has chubby chipmunk cheeks.

Since he is doing so well we may be able to put him in clothes soon.

Hunter keeps trying to chew on his fingers.

One Month Old

Happy one month birthday, Hunter!

It's hard to believe that one month ago right about now is the first time we were able to see little Hunter. Since that day there have been many ups and down and we've been through some very trying times.

Hunter is still going down the right path. It's been exciting watching him overcome all of the challenges that have come his way. Today they've been able to continue weaning him from his ventilator. He's getting to a point now where they have to slow down the weaning because it's requiring them to turn his oxygen up to compensate for the lower breathing rate. They also increased his feedings again, he is now up to 18 ml every three hours. They're both small changes, but small changes over time will get him home healthy.

Now for some real exciting news! I have an update from yesterdays report that Hunter will be off the ventilator in "several days." Doctor found Mommy and I while we were visiting Hunter today and said he should be ready to be vent-free in four to five days. Mommy and I have learned that nothing is ever for sure, but it's hard to not be excited about such a big milestone for our Hunter.

Hunter's beginning to move around (I think he knows what he's doing) and causing trouble for his nurses. He has a sensor under his arm that tracks his temperature and keeps his isolette the correct temperature. In order for it to work correctly he needs to keep his arm down, but no matter how they try to wrap his arm down he insists on lifting it up.

I'm sure everyone who has been in the NICU has noticed how loud it is. There are always beeps, babies crying, and nurses talking. Hunter is noticing too. Nurse commented today that when he hears another baby crying he makes an angry face and his oxygen destabilizes. I noticed today while visiting him that he definitely did to that and one time he even lifted his arm (the one he's not supposed to) up to cover his ear.

Moving Forward

Hunter is having another fine day. It seems that every day now he is making changes and they are all going in the right direction.

His oxygen levels are still good, they've been consistently under 30% which is fine with me. He is still working at weaning his way off of the ventilator. His breaths per minute setting has been turned down to 42 and he is usually breathing over the machine. Nurse yesterday said that he's begun pulling at the tube in his mouth and when babies do that it is a sign that they are ready to get rid of it.

Doctor is still very eager to get him off of the ventilator. In addition to the albuterol, she says she may occasionally give him doses of caffeine to increase his breathing rate. When I spoke to her today she told me that she thinks that he'll be off of the ventilator in "several days." That's right, she said several days. Not "weeks" or "sometime" or "eventually" or even "when he's ready."

Every day they seem to feed him more and more, and he's taking it all. He's had another increase in his meals, he's now up to 16 ml every three hours. Doctor says that being on TPN (the gatorade bag) for too long causes a certain type of jaundice due to some kind of doctor-talk about the liver. Hunter is showing signs of this jaundice, and it can't be treated with the blue lights he had back when he was small. They do have a medication they can give him to treat it but it requires that he gets a majority of his nutrition from his meals and less from his TPN. Doctor feels that we're getting to the point where he is eating a sufficient amount of food and is going to start him on this treatment soon.

A little while ago I wrote about him coming out of his isolette and moving into a baby crib. It doesn't sound now as though it's going to be happening for quite a while. I asked Doctor about it while I had her on the phone earlier today. She says that before a baby is removed from the isolette they need to hit pretty much every other milestone. They need to be eating well, steadily gaining weight, and breathing without the vent. He'll probably be in his enclosed bed until about two weeks before he gets to come home. We'll still get to hold him before then though, as soon as he is off of the ventilator Mommy and I can pick him up.

Another Exciting Day

Hunter's weight: 3 lbs, 7.5 oz

Today is the fifth day that I haven't been able to see my little Hunter. Mommy is feeling better though so she has been able to visit, take pictures, and keep me up to date on how cute he is. His nurses have all lately been commenting that he is acting so much better than he had been. He's opening his eyes more often, squirming around, and doing his best to get better so he can come home.

The doctor he had today has made it her mission to get him off of the ventilator. So far it sounds like he is making some good progress. His oxygen has been stable below 30% and now they are focusing on his breathing rate. The ventilator was set to 58 breaths per minute this morning but since he's tolerating it so well they were able to turn it all the way down to 48. I guess they are making much larger steps than they had planned yesterday when they said that were going to do 3 per day. Even with the big step he took today it's going to be a while before he is off completely. Doctor says they won't be taking him off of the vent until they can get the settings under 20 breaths per minute. To sum it all up, his oxygen is good, his breaths per minute are improving, the last thing they need to work on is the pressure setting (I don't know much about that yet).

The respiratory therapist has begun giving Hunter breathing treatments (albuterol) to help him prepare for breathing without the assistance of the ventilator. From what I heard he wasn't responding to the treatments at first but after some time it started kicking in. They're going to be doing these regularly now, I don't know for how long.

Another area where Hunter has been making big changes is with his feeding. Yesterday was a huge day when he increased his meals from 4 ml to 11 ml every four hours. Today he has taken another step, he is now up to 13 ml every THREE hours. Just like with his breathing its a big step but he still has a long way to go. By the time he comes home he should be eating what a newborn eats - 2 to 4 oz per meal. To get an idea of how far he still has to go there are about 30 ml in an ounce so he's eating about a quarter of a typical newborn's meal.

Everything is clearing up for Mr. Hunter and he is getting ready to do some growing. Today he finally finished his antibiotics prescription which means his pneumonia must have cleared up. Also, a cardioloist has looked at the echo they did over the weekend and found nothing wrong. He has a heart murmur and they know what is causing it but it is of no concern, it will get better on it's own, and he shouldn't need any more echos.

Big Plans

Wow! we certainly have some big news from today.

Hunter's nurses and doctors have big plans to make him get to where they feel he needs to be in the next few weeks. Because Hunter has been on respiration for 28 days now they consider him past the acute phase of chronic lung disease and want to get him off of the ventilator. Today they started weaning the settings on his ventilator to work on getting him off. The machine is now giving him 55 breaths per minute and they will try to turn it down about 3 a day until he is ready to breath on his own.

He is eating very well, too. They have increased his meals from 4 ml up to 10 ml and at midnight tonight they're going to go all the way up to 11 ml. He has been digesting it all which is a big change from a few days ago. It sounds like this extra milk will help him recover from the chronic lung disease and definitely help him grow.

Mommy found out today what the milestones are before Hunter is able to come out of his isolette and get into a regular newborn crib. He needs to be 32 weeks gestational age and about 3 lbs 5 oz. He's getting very close, he'll be 32 weeks on Thursday and he hit 3 lbs 4 oz a few days ago.

And there's more!

In two weeks they want to be able to start trying to feed him from a bottle. At around 34 weeks Hunter should be ready to suck, swallow, and breathe at the same time. Mommy and I have already noticed him feeling the tubes with his mouth, kind of like trying to grab onto a pacifier. By the time he is ready for a bottle we will be able to take him from his bed and hold him. It will be amazing to be able to hold him and feed him from a bottle.

Of course this is all assuming that everything goes right. If there are no setbacks he may be off of the vent in a week and a half. Go Hunter!

Same Old News

Today is another one of those wonderful days where I don't have much to write about. Hunter is doing very well again today.

Hunter's weight as of last night is up to 3 lbs and 4 oz. He's getting bigger every day. His nurse tonight is seeing him for the first time. When I spoke with her over the phone she said that she was expecting a tiny little baby and was pleasantly surprised to see how "big" Hunter is.

We are still working on getting off of the ventilator. It doesn't sound like there are any plans to come of the ventilator any time soon. It sounds like they will be leaving him on the machine until they stop getting fluid out of his lungs. They couldn't give me any idea of when that would be. I try not to ask questions like that because I don't want to give the impression that I am being impatient. I used to ask more often, but the doctors would usually repeat the same answer, "when he's ready."

He had his echo yesterday for the heart murmur, they didn't find a PDA... again. Hunter's daytime nurse passed the news on to the nighttime nurse that they did find something odd, but its nothing to be concerned about. I'll bet what they found is the left superior vena cava that they found the last time they did it.

What's is this left superior vena cava, you ask? Here's a definition from pediaheart.org

A persistent left superior vena cava is the most common form of anomalous venous drainage involving the superior vena cava and represents persistence of the left horn of the embryonic sinus venosus, which normally involutes during normal development to become the coronary sinus. Almost always, a persistent left superior vena cava enters the right atrium through the orifice of an enlarged coronary sinus. To this extent, therefore, the lesion is considered to be an anomaly of the coronary sinus.

Very interesting.

Everybody at home is getting over the cold now, except for myself. I think by tomorrow Mommy will be able to go to the hospital and we'll be able to post pictures again. I know I'm very excited about that, I bet in these few days that we've missed he's grown up so much.

Still Going Well

I just got off of the phone with Hunter's nurse, and she says everything is going well. She didn't have much to say other than his oxygen is currently at 30% but she's going to be turning it down soon.

Hunter still isn't digesting all of his food. He is still being fed 4 ml every four hours and they probably won't be increasing it until he consistently digests all of his food. In the meantime they've been making adjustments to his Total Parenteral Nutrition (TPN) to ensure he gets the calories that he needs. He's been on TPN since the day he was born, it's the yellow gatorade bag that I've referred to several times.

He's getting another chest X-ray tonight. His doctor has been ordering regular X-rays for him to make sure his lungs are recovering well. The X-rays show how his fight against his infection is going as well as any damage from his breathing machine.

Earlier today they noticed that Hunter had a heart murmur. This isn't anything new, this is the third time it's been brought to our attention. Since they found it again he's been ordered another echo cardiogram. I'm not sure what they're looking for; the other times they were checking for PDA, a condition where a tube that is supposed to close when born either doesn't close or opens back up. His nurse tonight said that no results have been written up yet so we won't know that until tomorrow.

Everybody at home is still sick, and now I'm getting it too. I was trying to fight it the best I could, but I lost. Mommy and Alyssa seem to be getting better slowly, Gavin and I are at the beginning of the cold though. This will be the second day that we haven't been able to visit Hunter. Not being able to be there is an odd feeling, but at least he is stable. It would be a completely different situation if he wasn't doing as well as he has been.

About the picture - Once while the nurse wasn't looking Mommy looked my way and made an odd gesture. I gave her that twisted face look that means "I don't know what you mean. Use words."

She pointed at the diaper bag we had brought in and whispered, so none of the nurses would hear, "take one of his diapers."

I quickly snatched one of the diapers out his bed and hid it away in the diaper bag. We sure got them on that one, they never suspected a thing. Anyway, the picture is one of Hunter's diapers compared to one of the diapers that his almost 2 year old brother and 3 year old sister wear. He has a small bottom.

"Everybody is Sick" or "Hunter's Great Nurses"

Mommy, Alyssa, and Gavin still have a cold. I'm trying my best to not get sick, but for the sake of Hunter and everyone else at the NICU we're going to be staying away for a while.

That doesn't mean there aren't any updates though. We called the hospital several times today to check on him. It has been quite a day, in a good way. This morning they made the big decision to take Hunter off of the oscillator. Dr. M decided that Hunter is ready to move on to the conventional ventilator, isn't that exciting?!

This isn't the first time he's been on the ventilator, he has been twice before only to be put back on the oscillator. There's definitely a part of me that doesn't want to get too excited in case it happens again. This is too big of an accomplishment to not celebrate though, so despite my reservations I can't keep from smiling. He's doing very well on his oxygen as well; yesterday he was at about 30% (as a reminder again, room air is 21% oxygen) and today he is down to 26%.

I think it was yesterday I wrote about his digesting, or not digesting, of milk. Today he has had more trouble with it, they checked at lunch time and he hadn't digested any of his breakfast. So Hunter had breakfast again for lunch today. The nurse says that it's not a big deal and is fairly common for kids who are on breathing machines. His body needs some time to adjust to doing all of the things it needs to do.

Since we're not going in to visit tonight I'm not going to be able to take a picture. We're very lucky to have some of the greatest nurses on the planet though. When I was on the phone with his nurse she asked if we were still coming in tonight. I told her that we didn't want to take any chances of getting him sick, especially with things going so well right now. Nurse knows that we take a picture every day and she offered to take a picture for us. If she doesn't have time before she leaves she's going to pass the mission on to the night nurse. It's nice that he has nurses who care to even notice these things and offer to help.

Good Boy Hunter

Hunter's weight: 3 lbs, 1 oz
Hunter's length: 15 1/2 inches

Since Hunter was born he has gained about half a pound and has grown about an inch and a half. He's getting so big, it seems like only yesterday he was a little red guy tied down to his bed with a hundred wires attached to him. Now he's slightly larger, slightly more ordinarily colored, and doesn't have as many wires attached to him.

Everything is going pretty well today, not much has changed again. We're still waiting for the big challenge of switching him over to the conventional ventilator. He's been moved to the ventilator twice before but both times has had to step back to the oscillator.

There isn't a schedule for when they are going to try this. The doctor's always say "It's up to him." This is convenient for me because now I don't have to ask questions - I already know the answer.

Now for something gross. They are still feeding Hunter 4ml of milk every 4 hours. They have to keep a close eye on feeding preemies because sometimes they don't digest their food. If the baby doesn't digest the food it can lead to the awful sounding Necrotizing enterocolitis (NEC). Hunter has been doing very well at digesting his milk until today. After he was fed this morning they found 1ml of milk left in his belly. Of course they have to get this out of his belly, I don't know how, but they did. Here's the extra gross part, guess what they do with it... they feed it back to him. EEEEWWW!

He's digesting better now, they haven't had to refeed him since lunchtime.

When I visited him today he was trying to open his eyes. It was amazing to see this so I ran over to get my camera. I got a short movie of him peeking around and examining his home. I can't even describe how amazing it is to be able to look into his little eyes.

The movie is quite loud. You can hear his oscillator machine (very loudly) in the background and the nurse asking if she can work on him without getting in the way of my picture :)

Hunter is Getting Better - Slowly

Today has been another great day, just like yesterday.

Hunter's doctors haven't been making any drastic changes to his breathing and that seems to be just fine with him. They have been adjusting his oxygen and other settings as he requires and they are gradually coming down.

Just about every time Mommy or I talk with one of his doctors we learn something new. Here's what I learned today. Hunter (and I assume everyone else) has small hairs in their lungs that move around to pull naturally occurring fluids from the bottom of the lungs up so you can get it out. This fluid comes out as you breathe.

The machine that Hunter is on doesn't allow him to breathe though. Instead of taking regular breaths like big people, his machine gives him ten or so very small breaths each second. Because of this the fluid doesn't get out and keeps getting pulled up to the top of his lungs. The fluid is building up in top lobe of his lungs and has caused that portion of his lungs to collapse. It's not as scary as it sounds, his doctors just need to do what they can to manually remove that fluid. Several times a day they vibrate his chest with a little massager to loosen up the fluid and then try to suck it out through his breathing tube. He doesn't like the vibrating and sometimes he doesn't tolerate it for very long.

He still has a long way to go. He's stable and slowly getting better, but he's likely to be in there for about another two months. It's been three weeks now of going to the hospital to visit with him every day. I figure we only have another 8-12 weeks before we can bring him home... thats quite a countdown.

A Normal Day

Today has been another better than average day for Hunter. We're all very happy about that.

He is still getting his lipids to make sure he gets the calories he needs. He is still on the Gatorade-looking juice that gives him the vitamins and other stuff he needs. They even turned up the amount of milk they are giving him. He is up to a whopping 4ml of milk every three hours. For a comparison 1 teaspoon = 5 ml.

His lungs are doing okay, not much has changed since yesterday. When Mommy and I visited his oxygen was turned up to 35%. Thats up a little bit, but nothing out of the ordinary.

I found out today that Hunter has an infections specialist who visits him every day. This "Infectiolist" as I call him keeps changing the antibiotic they are giving him. I don't understand this very well, but I believe he has had three different variations of a single bacteria. I know that he is on his third antibiotic. They keep changing because they find the bacteria is resistant to a certain treatment or they have a better treatment. Either way it seems to be working because he is looking very good.

Today was also an interesting day for Mommy, Myself, Alyssa, and Gavin. We all did something we haven't done in the past three weeks, we left the apartment! Technically we have left the apartment before but this was special, we didn't have to leave. That's right, we went out just for the heck of it. We drove around, visited our old daily hangout (Target), and went to McDonald's. I had a vanilla milkshake, it was good.

It's been one of those "boring" days that we're hoping to have many more of for the next few months. I would be one happy daddy if we don't have any more backwards days.

Caity's first post

Hi everyone, it's Caity. Bobby has decided since I was the one who got to speak to the Dr. today that I should be the one to post the blog.

Today Hunter is 3 weeks old. It's hard to believe that it's been 3 weeks already and how much Hunter has been through and all that we've learned. It's really amazing watching him grow right before your eyes. You look at him and you realize he's tiny compared to a full-term baby, but at the same time he doesn't really seem that small. I love my little man and I'm proud of the accomplishments he has made in these 3 weeks. He truly is amazing!

Luckily today is another good day for Hunter. He is still on the oscillator and his numbers are low on it. When we were there earlier he was at 30% oxygen , which is good! He is getting 3cc's of mommy milk every 3 hours, and he is also still getting his lipids (fats). His blood gases are also doing good today, the Dr. said that she was very happy with how her week with him ended. Also, the Dr. said that the PIE doesn't look like it's coming back on his X-Ray! That PIE can stay away as far as I'm concerned! So, overall today was a pretty laid back day for Hunter, which is exactly what he needs.

Oh! One more thing I wanted to mention, I asked the Dr. today when we will be able to hold Hunter. She said that he definitely has to be off the oscillator before we can. He either has to be on the conventional vent or CPAP. If he goes to the conventional vent and it looks like he'll be going to CPAP soon after then when he gets to the CPAP we will be able to then. If he goes to the conventional vent and it looks like he'll be there for a few weeks then we will be able to while he is still on the conventional vent.

That Hunter

Oh that Hunter.

I never know what to expect from him. Yesterday was such a backwards day for Hunter, and today he's completely the opposite. I'm not complaining of course, I'm very happy because he is yet again doing very well.

He is still on his oscillator, but they've been able to turn the settings way down. His oxygen this afternoon was at 28% (remember normal air is 21%). They are continuing to wean him off of the oscillator. It sounds like he is doing great.

Hunter gets a blood test several times a day to make sure he is exchanging the carbon dioxide in his blood for oxygen. The results from this test determine the settings on the machines and give the doctors an idea of how the treatment is working. His results have been up and down since he's been born, but today the doctor said that he has been getting the best results he has EVER HAD.

The X-rays have shown that his PIE has cleared up yet again. This is awesome because yesterday it sounded like they weren't positive their first treatment would work. We're hoping that it's gone for good this time.

It sounds like they are going to let him relax and get better. This is what he needs, we really want him to keep getting better.

Hard Day for Hunter

This experience with Hunter is definitely a ride full of ups and downs. Yesterday we had some great ups. Unfortunately, nearly all of the good things from yesterday have been taken away.

First thing this morning Hunter was doing fine. They had to turn his oxygen up a little bit overnight but that's not a big deal.

Around lunch time we received a call from Hunter's doctor. She said that he has been requiring pretty high settings on his ventilator. She had become concerned that they were using too aggressive of settings and that it was going to harm his lungs. Because of this they decided to switch him back to the oscillator. This was very upsetting because yesterday he had seemed to be doing so well and this wiped away most of the progress he made. She also said that the damage done to his lungs was going to slow his recovery and keep him on the very machines that are hurting him for even longer.

Fast forward another hour for an additional bummer. The doctor calls back. Shortly after our first conversation Hunter received an X-ray. On top of everything else, his X-ray showed that the PIE (Baby Emphysema) from several days ago is back! Now he's in a tough situation where the machine he is currently on is causing the PIE. He had already stopped responding to the machine they were using to treat the PIE so they are reluctant to put him back on that one. It's all very confusing. If I understand everything correctly they will be keeping him on the oscillator for now, but just lowering the settings and seeing if he will cope with it.

It's hard to believe that all of this has happened over only two and a half weeks.

Also, since our camera is broken we will not be able to post pictures. Sorry :(

Update: Hunter's blood tests have been consistently getting better since 11am. Hooray.
The camera is only partly broken now, it just doesn't zoom any more. I've posted a picture for today.

Small Victories

Sometimes the small victories can be very rewarding. Today was a day of small victories. When Mommy and I went to visit Hunter we weren't expecting many changes. Actually, yesterday his doctor told us they weren't planning on doing much today. We were very excited to see that he has been removed from his second breathing machine, the Jet Vent.

Everything today turned out the best of what we could have expected. Being removed from the Jet Vent means that his PIE has cleared up to a point where they don't expect it to come back. This also means that it has served it's purpose and they didn't see it being advantageous any longer.

We knew that when he came off of the Jet Vent he could have been put on one of two breathing machines. His nurse and doctor agreed that he would be okay to go on to a conventional ventilator, the preferred of the two machines. He was hooked up to the conventional ventilator and he is tolerating it very well. His Oxygen is turned fairly low (30%) and the other settings are low too.

This is huge relief after a week of fighting infections and other problems.

On top of all of this his other tests are also improving. They will resume feeding him tomorrow. He will also be getting more fats to help him get the calories he needs, this will be starting tomorrow as well.

Unfortunately, I forgot to bring my camera with me today. He's looking very good and seems more comfortable than he did yesterday.

Getting Better

Hunter is working on getting better. His preemie emphysema has cleared up. In fact, Hunter's doctor says it had cleared within three hours of starting treatment. He will be spending the next few days on his fancy machine, the jet vent, to improve the chances that it doesn't come back.

While Hunter is on these new machines they can't do much to alleviate the symptoms of his pneumonia. They seem to be sucking fluid out of his lungs pretty frequently. They're also vibrating his chest to help open things up. Overall he is still acting very healthy.

His brother and sister have been with Grandma for a while now and will be coming home tomorrow. That reminds me of something Alyssa said when I put her to bed about a week ago. She started asking questions that I didn't know how to answer.

We have a bedtime routine where we brush our teeth and then say goodnight to everyone, "Goodnight Mommy, I love you. Goodnight Daddy, I love you. Goodnight Gavin, I love you."

Before I put her in her bed she said she wanted to say goodnight to Hunter. I told her we would have to say it real loud so he could hear us in the hospital. And we said (not too loudly) "Goodnight Hunter, I love you."

Then she asked her difficult toddler questions, "Why is Hunter in the hospital?"

I wasn't sure how to answer, because I want her to be able to make a connection that Hunter is her brother even though she won't be able to see him for the first three months of his life. Also, I don't want her to misunderstand this as something scary so she'll be okay with traveling to the hospital while Mommy and I visit him. I felt like the Grinch explaining to the little Who why he was taking her Christmas tree, "Hunter is a little sick. The doctor will make him feel better, they'll fix him up there then we'll bring him back here."

Whew - crisis averted. Good answer, Daddy.

Or so I thought.

"Why is Hunter sick?"

I didn't have an answer for that one, but I do want her to understand whats happening in a way appropriate to a three year old. Instead of answering I asked her to go to bed and I would answer any questions she had in the morning. When morning came we had both forgotten about it. I still haven't had the opportunity to explain it to her.

Hunter Pie

Today on our visit with Hunter we noticed several big changes.

Change Number 1:
Hunter was receiving several additional IVs. He gets his nourishment from what looks like a bag of yellow gatorade. They had added one bag of sugar, probably to sweeten it up. He was also getting a blood transfusion. The blood was the creepier of the two, but the doctor explained that nearly all babies in their first two months don't make red blood cells. They regularly take blood to test his gases and need to replace the blood they take so he doesn't become anemic.

Change Number 2:
Hunter was removed from the oscillator. Hooray? No. Instead he was put on 2 - TWO - bigger machines.

So there's my little guy laying in his box getting a blood transfusion, several IVs, and two machines helping him breathe. He didn't mind though, he's cool.

The doctor was kind enough to explain everything. I know I wrote earlier about how being on breathing machines for too long can cause damage to the lungs. Hunter's doctor says that he has been harmed enough that we know he will have some sort of Chronic Lung Disease, we just don't know how bad it will be. Right now it is surfacing as something called Pulmonary Interstitial Emphysema (PIE). His doctor didn't go too far on explaining what it is, but she also didn't seem too worried. This new machine they have him on is supposed to help it get better. By the time we left today he had received an additional X-Ray which showed it was already starting to clear up.

In the mean time, however, his oxygen is still way up. They aren't currently feeding him. He has to lay a certain way to help his PIE improve. They're doing more cultures to see if he may have another infection. Hunter doesn't seem to care that he's sick though. He's still squirming and kicking - he's cool.

Although he's facing many challenges, he's doing very well and as soon as this is over he should have plenty of time to rest and work on growing.