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.