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.