Wednesday, July 14, 2010

Day101-105 (June 20-24)

DAY 101--

Happy Fathers Day! Unfortunately, Matt didn't even get to see Martin OR Katryn today. He had to work. But the Parent-to-Parent group gave all the dads a mug that says "Super Dad". Which, if you have a baby in the NICU, you really ARE a Super Dad.

Martin was moved to room 8 today. There are only 9 rooms, and Martin has hit all but room 9. Which is good, because room 9 is the isolation room. We don't want to see that room.

There is also NO sign of any of the hernias the doctors had been so worried about. That's just typical Martin for you. Something ridiculous will pop up and they'll be worried about it, just to have it disappear the next day. I'm ok with that.

It was also a busy day food-wise. His feeds were increased to 46mls, and they started a new fortifier. It's being mixed with the other fortifier 1/2 and 1/2. They decided to start this, so they can get him completely on the new fortifier, which I can by at the grocery store. AKA--a can of formula to mix in my breast milk.

he took a pretty good average today, about 1/2 of his feeds from me, which is awesome!! I'm trying to bottle tomorrow, and I think he'll do AWESOME at it.

DAY 102--

Martin had a lot of reflux during the night. The doctors think it's probably from the fortifier change, and are giving it some time to adjust. They also had to change his feeding time to the 1/2 hour, instead of the hour. I hate that! so he's at 8:30am, and then every 3 hours after that. I really prefer the hour. it's easier for me to get their at 3pm, than 2:30, while dealing with Katryn's nap schedule.

At the 2:30pm feeding, Martin took 4mls from me. I feel like he took more, but it's hard to gauge how much more. At 5:30pm, I tried a bottle. he did ok, took about 10mls, but he was dribbling a lot, and I could tell that it was coming out too fast for him, even though we were using a slow flow nipple.

His oxygen also went down to 1L!! that means a regular cannula, instead of the high flow!! woohoo!!

DAY 103--

What a crappy day. Sarah, one of the OT's, tried to give Martin a bottle in the morning. He maybe took 7mls. And when I was breastfeeding, he took hardly anything either. I just feel like he's never going to get it, he's never going to be able to eat OR breathe at the same time. His oxygen needs were a lot higher today than normal.

it was just one of those days where I cry the whole drive home, feeling so helpless.

DAY 104--
I show up today, and what do I find? That cursed high flow. I hate it. I hate it so much. yes, I know it helps him breathe, but we can't come home when he's on high flow. They won't let me breast-feed when he's on high flow. We just get to hang out in the NICU, and watch baby after baby be discharged. It was one of those days today. I think 3 babies got discharged in his room. I could hardly keep myself from crying about it.

We were able to work with the paci and a small syringe of milk, to help keep his oral skills up. And they are leaving it up to me to decide whether or not to work on breast-feeding. it's just frustrating. Everytime we start making progress we get kicked back down.

They also took an xray of his lungs, because his work of breathing has increased as well. The doctor wants to have a care conferance with us. Basically we get everyone in the room who is involved in Martin's care and work out a game-plan. at this point, it's probably a good idea.

The doctor also decided to start a medication that was dilate his lungs some, to help him breathe. One of the side effects is it makes his heart-rate skyrocket, like 200bpm.

And he's 1oz shy of 7lbs. I was totally planning on bringing home a tiny baby. He's already bigger than katryn was when we brought her home from the hospital. I'm so glad we didn't invest in any preemie clothes!

DAY 105--

3 freaking liters of O2. THREE!!! I don't understand why this poor kid just can't breathe. They are now calling in an ENT doctor to check in traycia and make sure it's formed properly. Part of me wishes that they'll check it and say "oh yup! this is why he's not breathing, and this is what we'll do to fix it" and give us the magical answer. The xray they took yesterday showed a lot of trapped air in his lungs. So air is getting in fine, but it can't get out i guess.

Because they saw all the trapped air, they drew some blood to check his CO2 level and make sure the O2 and CO2 and exchanging properly.

I stayed through shift change, and went to the parents group--Lemonade in the Lounge. It was actually quite nice. Rachel talked about how good a g-tube can be. I'm starting to realize that this is where we're headed. Martin can't eat if he can't breathe. he's not going to be one of those babies that gets to eat whenever they want, and then gets to go home. He's not going to take a bottle in the NICU, he's not going to eat by mouth.

I'm having a really hard time with it. Really hard. But rachel mentioned how with a g-tube, it can make feeding a positive experience. if Martin latches on to me, I can just praise him over that, and not press him to take a certain amount. I don't have to try to force a bottle on him. If he takes 5mls from the bottle, that's fine! We can make this work.

But that doesn't alleviate my fears any.

Saturday, July 10, 2010

Day 96-100 (June 15-19)

DAY 96--

They moved Martin to room 2 today. Room 2 is nice, because there are only 2 babies for each nurse. Because Martin is so needy right now, it's very good to have that. He had a nurse he hasn't had for a while. Even though both our primary nurses are working today! That made me a little annoyed, because they know him so well, and they weren't working with any other of their primaries (actually, Martin is their only one) and Martin's nurse wasn't a primary for the other baby.

But she still knows Martin very well, because she's had him quite a bit before. And it was actually good because her son had a hydracele and so she knows what to look for! I was grateful for that. This hydracele does explain why he's been so grumpy lately.

His O2 is at 2L, and about 30-35%. And they increased his calories to 30. That worries me very, VERY much. I just hope he can tolerate it!

I was there all day, and breastfed him every time. We had a nice little station set up with the scale, and pump. It was awesome. at 9am, he took 10mls, 12pm only 8mls. :( but then at 3pm, he took 22mls! that's the most he's EVER taken!! but then, at 6pm, he took 28mls!!! I was doing a little dance around the room. I feel like he's getting it! There is a light at the end of this tunnel!!

DAY 97--
Martin's hydracele is completely gone now. There is no trace of it anywhere. The NNP is shocked, because those take a while to go away. But that's totally Martin for you, to just do everything completely on his own.

at 9am, he took 14mls, and at noon he was way too sleepy to do anything. at 3pm, he took 14mls. Sarah, one of the occupational therapists came to work with us at 6pm. She gave me a new breast shield to use, one that's a little bit bigger, so it fills his mouth more. He ended up taking 24mls! I was so proud of him!

DAY 98--
They stopped the dex steroid today, and tried to put Martin on 1L of oxygen. He totally failed, and was desatting like crazy with a few minutes. So he was bumped back to 1 1/2L.

At the 3pm feeding, he did good. he does really well as long as I use the shield. i try not to use it, and he won't do a darn thing. Eventually he'll get weaned off of it. I'm stubborn enough.

At the 6pm feeding, Sarah came in again to help us. She said he was doing amazing. Had the perfect latch and suck. When we weighed him though, the scale only said 10mls. We could not believe it!! he had so well!! so we gave him credit for 30mls. it's so hard to tell though.

When I came back at 9pm, I forgot my shield. So it took some coaxing, but eventually he latched and took 14mls. at least I know he can feed without the shield!

And this is a picture of the high flow machine. it take up a LOT of space. Hopefully today is the last day we ever see this dang machine!! (although it is good, because he helps him breathe)

DAY 99--
I was there all day today, and we worked on feedings. at 9am, Martin did really good, but the scale said 8mls!! I just don't trust that scale anymore.

They switched him to a regular cannula instead of the high flow!! woohoo!! he's getting so close to coming home!! he's still on 1 1/2L, but it's not the high flow, which is awesome.

Because they switched him over right before noon, he was too sleepy to do much of anything feeding wise. I don't blame him, it's rather stressful having things taped and untaped on the face.

At 3pm, we struggled again. he was having trouble breathing, and desatting. Come to find out, my chair was on the O2 line! I felt horrible, and was so upset about that. I'm so used to the giant tube that comes with the high flow.

at 6pm, Martin did really well. Meagan, one of his primary nurses, came in and watched. We both agreed he was doing great--good latch, good suck. I had given him 1ml in a syringe, just to kind of help him realize it's good. And then we weighed him when he was done. 2mls!! I HATE THAT SCALE!!!! It just lies to me!! So Meagan checked his residual, which had been zero before we started, and he had about 5mls in there. so he obviously got more that the scale said.

I'm just getting so frustrated. It's wearing me out to feel like we're not making any progress on feeds. half the time, I just end up in tears because he's not doing anything, and I'm so scared about getting a g-tube. It's really hard.

DAY 100--

I did not expect to be here this long. I had a lot of goals set. Triple digits? No way! But yet, here we are.

We decided to celebrate with a bath. No, this is not his first bath, he's had other baths. But this was the first bath that I have given him.

He didn't care to much for it I guess. but look at that double chin!! The extra calories are definitely doing something for him.

We tried 1L of O2, but he was really retracting so he was bumped back up to 1 1/2L. We also worked on our feedings. I want to make sure he has it figured out before we introduce bottles. at 9am he took 10mls, at noon he took16mls. After which he puked it up all over me. All of it. I hate that! he works so hard to get the little amount, just to loose it all.

at 6pm, Martin only took 8mls, and he was using really shallow sucks. I think he was just worn out from the bath.

The NNP did say he has ANOTHER hernia they're worried about, and are keeping an eye on. It's one thing or another.

I actually had to step out for a while (aka--got kicked out) because the other baby in Martin's room had extubated himself from his vent, and they had to reintubate him. So glad we don't have to deal with that! the little bit I saw was crazy!

Day 91-95 (June 10-14)

DAY 91--

Martin was so cranky today!! Wow! During the night, the NNP ordered a xray of his belly to make sure it wasn't distended (again) and also a full body xray to look for fractures! Because he seemed to be in so much pain, they didn't know what else to do!

Everything looked normal though, thank heavens. The weaned his O2 down to 4L today, and he's sitting at around 30%, which is pretty good.

And I had to post this picture, because sometimes this is just how it feels in the NICU--like a prison. Today was one of those days, since he was just having a hard day.

DAY 92--

The NNP thinks it's colic, and that explains away Martin's crankiness. I think colic is a load of crap, personally. I don't think babies cry, just to cry. So they started an anti-anxiety med, to help keep him calm. If he gets too worked up, he can't breathe, and ends up desaturating, so they have to give him more oxygen.

They also started a med--mylicon--to help with the gas. Perhaps that's why he's been so fussy lately. We're following the mantra: "Let sleeping babies lie". If he's sleeping when it's time for his cares (every 3 hours) we were NOT waking him up.

The weaned his O2 down to 3 1/2L, and he's been around 30%, which is awesome. The nurse also took his foot-prints and put them on the little souvenir birth certificate. They definitely are a lot bigger than they were when he was born, but no one else had done it for us! I'm glad she thought of it.

And now Martin weighs 2920grams--6lbs7oz!!

DAY 93--

This is what's keeping Martin calm right now. He practically lives in the swing lately. But it keeps him calm, and that's really all that matters right now.

The nurse has been keeping a heating pad on his tummy, and that seems to help. Hoepefully the mylicon kicks in soon. But the adivan (anti-anxiety med) has really been helping him to sleep! They have also stopped most of his meds right now, until they check his electrolytes in a few days.

They bumped his O2 down to 3L, and he's doing good on that. And he's 3 months old today!! Good grief, we've been here a while! We took Katryn to the NICU carnival reunion, and she had a blast there!! I can't wait until next year, when Martin is old enough to go!

I called after shift change, and talked to the night nurse. She mentioned that she felt a hernia, and a hydrocele in his testicle. So I googled that, and it's soo not good! Basically, his testicle has twisted and is cutting off circulation. They're keeping a close eye on it, and making sure it doesn't change colors, or start dying. Then we have to have emergency surgery, so he doesn't lose it.

It freaked me out. Really freaked me out. If it's not one thing, it's another with this boy! It was heartbreaking, I could hear him crying in the background while I was talking on the phone with the nurse; he was just inconsolable. They gave him a bath and some Tylenol, to try to calm him down.

DAY 94--

Martin has been sleeping good, which I'm so grateful for. Something they have been working on seems to be helping!

They changed his O2 to 2 1/2L, and might try 2L in the afternoon, if he does good on the 2 1/2L. it worries me when they do too much at once, because he needs things to go slow.

They did change to diaper counts, instead of having his diaper weighed every change, and they only need to check his vitals every 6 hours now! Woohoo! bring on the cloth diapers!!

DAY 95--

Here's Martin in his first cloth diaper. It's specially made for preemies, and he seems to like it. I don't blame him. I'd rather have something soft on me too!

It was a busy day today. They moved his OG feeding tube to an NG (nasal instead of oral) and we started breatfeeding again!! woohoo!! at noon, he took 10mls, 3pm he took 10mls and then he went NPO. Of course. It seems to never fail every time we start breastfeeding that something like this happens.

They had the urologist come and do an ultrasound on his testicle, and check to make sure there was enough circulation going to it so he doesn't loose it. It there wasn't enough, they were goig to take him in for emergency surgery. There is, but barely enough. so they're just keeping a close eye on it, make sure it stays 'happy' and she put it, and not get 'angry'. I had to laugh though, and the human characteristics given to his testicle.

so the NPO only lasted about 3hours, and at 6pm, I breastfed him again and he took 20mls!! I was so thrilled!! And it was on the side that doesn't produce as much milk. I wanted to take a picture of the scale.

My sister AnnaJune came and visited with us for a while, and came it our survivor beads activity. It was nice, since we haven't had very many family members come visit Martin.

I also brought his own clothes today, because he's too big for the preemie stuff. I remember when the preemie clothes used to be huge on him!! It's amazing how much he's grown.

Thursday, July 8, 2010

Days 86-90 (June 5-9)

DAY 86--

As you can see, martin is still on the CPAP. He's actually doing quite well on it, but it's hard to hold him. It's hard.

They decided to discontinue the diuretics. It's turned everything into a vicious cycle. The diuretics cause him to pee more, and by peeing more, he loses sodium. So they increase his sodium. And it just goes back and forth. So they stopped them.

His electrolyte levels will be retested in a few days, and hopefully things will level out. One of his Primary Nurses was working today. I'm always so grateful when they're working because they know him so well, and I've come to be so comfortable with them and can sit and chat. It's nice!

DAY 87--
No real changes with Martin today. His oxygen is at about 40% on 7 liters. I would really give just about anything to be back on the high flow. As hard as it is to have him be on the high flow, right now I would be grateful for it.

DAY 88--

HIGH FLOW!!! I never thought I'd be so thrilled to see Martin on high flow. He's on 5 liters, which is the most I've ever seen him on the high flow. But he's on about 40%, which is normal no matter what his flow level is.

His calories were increased to 26 calories, which still terrifies me. Every time they mention increasing the calories I cringe, and wait for a phone call to come in the middle of the night.

I went and did the survivor beads today with the Parent Support Group. Now I have a cpap bead in the middle of the cannula beads. That's Martin for you though.

They also decided to start the steroid dexametha-something today. He's been on it before, and it helps get his oxygen needs down. So they're hoping it works again. It's hard, because it is a steroid, it can have serious side effects. They have to weigh the benefits against the risks. In Martin's case, the benefits outweigh the risks.

DAY 89--

FIELD TRIP DAY!! OK, so it's not really a field trip, but it's the farthest he's been. Also, it makes the transfers to the Children's Hospital next door not seem so traumatic. They're actually not very traumatic anymore. The first time was VERY hard, but now it's just another thing. They took him over today for a sweat-test for cystic fibrosis. Although he has already had a negative blood test, they can't figure out anything else. I googled about it, and he has almost every symptom of CF. It's scary.

You can see them packing up Martin on the life flight incubator for the transfer. That's Allison in the background. She's one of the Martin's Primary Nurses. That pretty much means, whenever she's working she gets to take care of Martin. She knows him REALLY well, which is great.

We had some difficulties with this transfer. You see, Martin is on 5L of O2, with the high flow. The transfer team doesn't do high flow. At all! And the highest they go is 2L. So guess what they decided to do?

A trial on 2L of 100% oxygen. Because Martin's eyes are fully vascularized they can do that. High levels of oxygen can cause setbacks in eyes that are still developing. I was freaking out a little bit, and I was NOT comfortable with their decision.

He did ok, so they packed him up and we went over. While I was filling out paperwork getting him registered and everything, since he was an out-patient, they got him started. First they put little electrodes on his arms to stimulate the sweat glands. Then the cloth to collect the sweat, then plastic-like saran wrap stuff, then gauze, then about 100 warm blankets. I could barely get my arms around the kid!! We had to wait for about 20-30 minutes. They unwrapped him, collected the gauze and told us they'd call the NICU in about 10 minutes to let us know if they got enough.

So we packed up and went back to the NICU. They called us, and said they had enough on 1 arm, but not on the second one. Therefore, they couldn't test. Annoying!! We went through all the troubles of trying to find a way to get him there, and make sure he had enough oxygen just to have it not work out, because he's probably not old enough to make enough sweat. They said they'll probably test again when he's older.

DAY 90--

Today is the last day of the large doses of the steroid dex. Then they'll decrease it for a few days, and then decrease it again.

I talked to the NNP and the Doctor about the future plans, and it basically sounds like they're just working on getting the O2 under control. They weaned his O2 down to 4 1/2 L, but it doesn't look like 4 1/2 L on the gauge, and it doesn't sound like 4 1/2 L (O2 that high is pretty noisy). It looks like 1 1/2L and sounds like that too. But he's doing just fine on it, wherever it happens to be.

He started being cranky today. It sounds like he's in pain though, not like he's just unhappy. THe nurse tried to swing, and that helped a little bit, but it's just a heart-breaking cry.