Friday, May 28, 2010

Day 56-60

DAY 56--

Martin's feeds are still being upped, and he's now up to 36mLs every three hours! It's still fortified, to help him gain weight. He's also 4lbs 15oz. He's gained 2lbs since he was born, which is awesome.

he's still on the high flow O2, 3 liters. The doctors decided to start some diuretics to see if that will help clear out any fluid in his lungs, which will hopefully help him breathe easier, and get him weaned off such a large amount of oxygen.

Aunt Natalie came and visited us today, which was nice. She's in nursing school right now, and so she understands everything going on so well!

DAY 57--
They stopped the fortifier in Martin's milk today, and explained that they think it's the culprit behind Martin's digestive problems.

It's made from cow's milk. DUH!!! Of course it's giving him problems!! Katryn had problems with dairy products. She still can't drink straight cows milk. When the fortifier is described as "Human Milk Fortifier" I think it's fortifier made from human milk. Not fortifier made from cows milk for human milk. Boo!! But now hopefully he'll get better.

Another Occupational Therapist came and taught us the bone density workouts for Martin's arms. He seems to enjoy them, which is good. With all the negative touch that occurs in a hospital, the positive touch is wonderful for them.

The Doctors decided to stop the inhaled steroid they were giving for his lungs, and switch it back to the oral steroid. He also lost about 5oz from the diuretics they started yesterday. And he was so close to 5lbs!! He's also still on the 3L high flow.

My mom came by today also and visited. It's great to have such support from our family members as we're struggling in this situation.

DAY 58--

We got to practice breast-feeding today!! Yay!! They have me pump before hand, and it's basically just to teach him to be comfortable and how to latch. After a few tries Martin latched right on! it was awesome, and for the first time, I felt like there was a light at the end of this tunnel.

He's still on 3liters high flow oxygen, but the percentage he needs is getting lower. Right now, he needs about 35-40%. He's also on 4 medications right now: dexa-something, for his lungs, prilosec for his stomach, sodium and potassium because his levels are low.

DAY 50--

Happy Mothers Day! Matt and I went up to see Martin today, and we both got to have a little bit of snuggle time. Always wonderful!! We did some non-nutritive breast-feeding again, and Martin did so great, it was awesome!

The Parent-To-Parent group there, also gave out little mother day gifts to all the moms. It's hard on mothers day, so not spend the day with your kids, to leave one of them at the grandparents, while you go to the hospital and see another one. The Parent-to-Parent group is so understanding, because they have all been there before!!

Somebody donated cards to the NICU as well, mother's day cards for the moms. It's so thoughtful of people.

DAY 60--

What a great day today. Martin's O2 percentage was lower, although he's still on the 3L. They think that the dex steroid is working, so they upped it a little bit.

We also did survivor beads. Martin's necklace is getting so long! And the best part of the day. . . . .

Katryn got to come say hi to Martin. She honestly didn't care that much. Pointed to him, "Baby Martin!" and then squirmed around to get out of dad's arms and explore the room. Which isn't a good thing, when there's so much trouble she could cause. So it was a short visit. But it was nice to show her that Martin is real.

Thursday, May 20, 2010

Day 51-55 (May1-5)

DAY 51--

They started feeding Martin today!! They're giving him 8mLs every 3 hours, just to work him back up to where he was at before. We're so glad, because he's been NPO for 10 days now. NOT fun. As you can see in the picture, he's a little puffy.

His O2 percentage was a little higher than normal today as well. Hopefully his needs don't continue to go up, I want to start breastfeeding him! When he's on the high flow, they don't like to let them start breast-feeding, because it's hard for them to breathe.

They also gave him a picc line. They can last practically forever and he's now getting his fluids through that. I walked in on them trying to get it yesterday, but his veins are just too small right now, they couldn't get it in his arm. Instead they put it in his neck. :( But at least its better than getting a new IV every day, or sometimes even twice a day. Less pokes.

DAY 52
This is one of Matt's favorite pictures. *sigh* I know, boys are weird. You can kind of see the picc line in his shoulder there. and he is super puffy today!! He's probably retaining some fluid

His O2 is back up to 1 1/2 L, and the percentage is high. It's so hard to see that, because we were hoping to get him weaned off the O2, and he's going the opposite direction.

They upped his feedings to 15mL every 3 hours, and he's taking it really well! He's probably just so grateful that he's being fed again! I would be. Matt's parents were also able to come up for a little while. I feel a little bad, but we're not letting ANYONE touch him, we don't want to risk him getting anything. I know it's hard, especially for grandma, but they're so understanding of his delicate situation!

I love this picture. He looks so big!! Completely different from the first time I held him. He's such a snuggler too. I love it!

While I was in the other room pumping, Matt helped the night nurse change Martin's bed and his clothes. They do it every night. Some parents actually bring in clothes for their baby to wear, but after losing his hat, I'm not risking it. He can wear the clothes the hospital provides. :)

DAY 53--
Wow, another busy day. Some days there's nothing new, other days it's a TON!! Martin is back in an open crib, and out of the warming bed. It's a sign we're moving forward in the right direction.

His still on 15mL feeds, and at one point, he had some blood come back up when they were checking the residual. (you can see it in the tube above his head in that picture). That freaked me out, but they're worried, they think it's just old blood.

He's back on the high flow O2, and they started an inhaled steroid to see if that will help his lungs out. The poor guy just can't get his needs down. We're fully planning on having to come home with oxygen, which scares me.

They also had to give him a transfusion. They ran a blood test, and with all the blood they have taken to run all the tests they have to run, turns out his red blood cell count is really low. And then we learned that the red blood cells are the ones that carry the oxygen!! so if he doesn't have enough of them, then his body can't transport enough oxygen. So they stuck an IV in his foot, and gave him the transfusion.

They also changed the visitation rules! We can bring Katryn in to say hi, for 15 minutes, twice a week. We're very excited about that!

DAY 54--
You can see how Martin is a lot more red after the transfusion. They upped his feeding again, to 25mL, and they started him on prilosec. He was on some sort of medicine that helped coat his stomach, and after they stopped that he started having some reflux. The doctors think he probably did get a small stomach ulcer when they stopped the medicine, and are hoping the prilosec helps.

They also started sodium again, since his levels were low (again).

DAY 55--
Today is our 4 year anniversary! Martin had an eye exam today, and everything looked great! He doesn't need to see an eye doctor for another 6 months. We're so glad about that. A lot of preemies have ROP, where the blood vessels in the eyes are fully developed. And then if they're on high flow O2, the problems can increase and they can go blind.

We're also especially glad about the positive eye exam, because Martin is back on 3L high flow O2. Just keep going up and up.

One of the Occupational Therapists came and visited with us for a while. She taught us how to get Martin to open his mouth wide with the pacifier. This way, when I can start breast-feeding he'll be able to latch on good, since he knows to open his mouth wide. She put a little bit of milk on the paci and on a swab to tempt him. After tasting it on the paci, we went after the swab like crazy! I think he'll get the hang of breast-feeding fast, which means he might come home soon!!

She also taught us some exercises to help with his bone density. It also helps foster the idea that there is good touch, and hopefully teach him that just because someone is touching him, he doesn't need to go into panic mode. He's a very sensitive baby, and doesn't like being moved or bothered.

Sunday, May 16, 2010

Day 45-50 (April 25-30)

DAY 45--

This is one of the things I had nightmares about. Showing up at the hospital and seeing an IV in my baby's head. I started crying right then. It's so hard to see all their little bodies are put through in the NICU. All the suffering they have to go through.

Some people would say "At least they're young enough they won't remember it". But I'll remember it, and that's hard.

My brother-in-law came up to the hospital and helped Matt in giving Martin a blessing. If nothing else, it helped me feel better.

DAY 46--

They change the IV spot every single day. It's still in Martin's head, just in a different spot now. He had it in his feet and hands too.

They started him on a 7 day NPO--that's latin for nothing by mouth. Only problem is he's been NPO since last thursday. That was FOUR days ago. And they're counting today as day TWO. That's an extra three days of NPO.

His oxgyen needs are going down though. He's on 2 1/2 liters high flow. So the round of steroids they have been giving him seem to be working.

DAY 47--

Martin is still pretty miserable. He probably thinks he's being starved. Getting fluid to keep you hydrated, and getting fed are 2 completely different things. I hate this. It's not fair to keep food from a newborn. They still have no idea what's causing the GI distress though. They're just pumping him full of antibiotics.

They tried putting a picc line in his arm today, but his veins are too tiny that they couldn't get it in. They are going to try again, because it'll be so much better to have a picc instead of a new IV line everyday. The picc line can stay in practically forever. His poor arm is so bruised up now though.

The nurse working with him today though, commented on how long his eyelashes were. I told her that she should see Martin's big sister! That girl has eyelashes that go on forever.

Martin's oxygen needs are still dropping which is wonderful news. He's down to 2L now.

DAY 48--

Today is Matt's 26th birthday. He came up to the hospital with me which was very nice. It's hard being the only one sometimes.

Martin seems to be doing a little bit better. Hopefully we're almost past this. The doctor said that the xray of his GI tract looked a LOT better than the day before. So that's good news. Hopefully he can get off the stupid NPO sooner.

He's also down to 1 1/2 L O2!! He's getting there! Maybe I don't have to worry about bringing him home on oxygen.

They also got the picc line in, which is great. They didn't get it in his arm, they ended up going up by his shoulder/collarbone area. But this will help while he gets the rest of the antibiotics.

DAY 49--

I hated the nurse we had today. We went up in the evening, after the shift change. The nurse told me I couldn't hold Martin. I was shocked. She said since he's not feeling well, he needed to just lay there. Yeah, because when you don't feel good snuggle/comfort time with mom won't help. Boo on her!

She said I could lift him up while she changed the sheets. So then I just held him and wouldn't put him back down. He was doing better in my arms anyway. His O2 levels were higher, which is good, and he was very content. He's on 1L O2 and doing pretty good on that.

The nurse also was too busy taking pictures of the twins across the room from Martin. She didn't even see us leave she was so wrapped up in those two kids. It drives me crazy sometimes, that some nurses play obviously favorites.

DAY 50--

I love this little blue hat on Martin. It's such a great color for him. I'm so glad I made a bunch of diapers out of this fabric! He seems a little bit better today. Perhaps he's just resigned himself to the fact that he'll never get food again. :(

He's weighing in at 4lbs 13oz. Yeah, he's GAINING weight, even though he's not being fed. It's all that extra fat they're putting into the IV line.

Friday, May 7, 2010

day 43-44 (April 23-24)

DAY 43--

I showed up very excited, because we were going to practice breast-feeding. Instead I was told that Martin had gotten worse. They stuck a larger tube down his throat to help drain his stomach, and keep the bloating down. They had done some xrays on his belly and it didn't look right so they were going to transfer him to Primary Childrens for a barometric enema (or something like that)--basically the pump a bunch of fluid into him while they're giving him an xray and they can see where the fluid goes, and it goes through his colon and intestines. This way they could see if there was any obstruction that would be causing the bloating.

I show up to find him in a warmer bed, with an IV in hand because they're not feeding him so he needs his fluids by mouth. My poor boy was miserable, and I couldn't do anything. It's so hard with preemies, because something so little that wouldn't really do much in a term baby could be disastrous.

I was trying so hard not to start crying. The NICU roller-coaster is HORRIBLE. It's hard enough being post-partum and having your emotions already out of whack. Add in having a baby in the NICU and it's enough to send anyone over the edge.

so I sat with him for a little while, and then the life-flight crew came to transfer him. I couldn't bear to take any pictures of the gurney with the isolette on it. It's not something I want to remember. Martin was so unhappy. They transferred everything to the isolette--the oxygen, the different monitors, the anderson tube down his throat and the suction attached to it.

And then we left. Primary Children's is attached by a sky-walk to the hospital, so it's just a short 5-10 minute walk. I was not expecting to walk through the main parts of the hospital though. Everyone was staring at us, and gawking at the tiny baby on the life-flight gurney. Openly staring at us, wondering what's wrong with that baby? I wanted to smack everyone and yell at them to stop staring at my baby! it was all I could do to not break down and collapse right there in front of the cafeteria.

I tried to detach myself from the situation, because I couldn't handle it being my child. My child going through this and I had to let it happen. They gave him the enema and I held his pacifier in his mouth while he sucked vigorously and whimpered. The man holding him was so rough, just moving him around like it didn't matter about being gentle because of how small he is. I hated it.

In the end there was nothing there, and everything looked normal. Which was good, but broke my heart at the same time because he had to go through all that. I'm so grateful he won't remember it.

It was the hardest day in the NICU so far.

DAY 44-

Martin still isn't doing any better, and they're still not feeding him. The poor kid is so miserable. They have to change the IV's everyday, and he has two going. They don't know what it is, so they're giving him like 3 different antibiotics to try to take care of it.

I was able to hold him for a while, which I'm so grateful for. He was able to calm down enough and get some rest. His leads came off while I was holding him, and the nurse said she'd fix them when I put him back in his bed. About 10 minutes later another nurse came over and saw that the leads weren't picking up, and even though I told her the nurse said she'd replace them later, she took it upon herself to take care of them, so she shoved her hands in the blanket and pushed the leads back. Poor Martin just started crying. I was upset because his stomach isn't feeling good, and she's sitting there pushing on him.

His oxygen levels are getting better day by day though, so the steroids are doing something. But like everything else in life, when one thing starts getting better, another thing gets worse.

Day 39-42 (April 19-22)

DAY 39--

Because of Martin being on the high flow, he has a bigger oxygen line going to the cannula. There gets to be a lot of condensation in the tube and water builds up. When I pulled Martin out of his crib, AND when I put him back, he ended up getting water up his nose. Then the nurse has to come suction his nose out. Poor kid.

DAY 40

I made this hat for Martin while I was on bedrest. I learned how to use double pointed knitting needles. It turned out really great I think! He kind of looks like a little military kid.

We talked to the NNP today (the neonatologist nurse practitioner) and she told us that they're going to start a more aggressive round of steroids on Martin to help his lungs out. It's called dex-a-something. Dexamethazine or something? I can't remember. Anyway, they're hoping this will help clear up his lungs and get him off the high flow and able to come home soon.

DAY 41

Martin is down to 3 1/2 L O2 today, and he's breathing really well!! It's so great to see some improvement, it helps make the NICU experience seem like there might be an end in sight!

One of the Occupational Therapists came and talked with me. They help with learning to breast-feed, teaching your baby different things to help show them good touch, and not everytime someone touches their foot that they're going to get poked. She told me that we can start 'practice' breastfeeding on Friday when they change out his feeding tube!! I couldn't be more thrilled about that. The sooner he learns that, the sooner he comes home. He can come home with oxygen, lots of preemies do, but I don't want to deal with changing a feeding tube! It's not a real feeding, since they have me pump before.

The OT also talked about how great skin-to-skin is in preparing for breastfeeding, so we'll be doing a lot of that over the next few days.

And that cute hat I knitted him? Yeah, it's gone. :( We put a label on it, so it wouldn't disappear and it still did!! I'm so sad about that. . . .

DAY 42

I'm starting to spend more time at the hospital with Martin. He has his 'cares' every 3 hours, where they change him, check his temp, and feed him. I now stay there for 2 sets of cares, and pump twice while I'm there. It's great for him to have fresh milk, instead of frozen heated up for him. He gets more nutrition from the fresh.

We spent a lot of time skin-to-skin. He was a little cranky, but he's always been a sensitive baby when he's being bothered. I think it has something to do with all the negative touch that happens in the NICU.

I love seeing him with clothes on! His O2 is also doing better, it seems like the steriods are having a positive affect on him! He's doing to 3L and breathing great.

On a bad note, we got a phone call at 11:30pm from the NNP on duty. She told us that Martin's tummy is bloated and hard (they measure it every set of cares) and he seems to be in pain when they push on it. So they're holding back his feedings right now and taking an xray to see if there's something going on.

Sunday, May 2, 2010

Day 37 & 38 (April 17 &18)

DAY 37--

What a shock today!! Martin's wearing clothes! They're getting ready to put him in an open crib, so they're preparing him for that environment. He's maintaining his own temperature well, so he doesn't need to warm isolette to keep him warm.

it's very weird to see him with clothes on, because I've never see him with anything but a diaper on. But it's such a big step!!

DAY 38--

We used a different camera today, because mine was locked in the house. And thus, we don't have the pictures off that camera yet.

But we showed up today, and Martin was in an open crib!! It's so nice to be able to touch him without having to open little doors or anything. we both held him for a while, and the nurse taught us how to use the crib.

Day 35 & 36 (April 15 &16)

DAY 35--

I had another funny experience today in the NICU. ANOTHER nurse came up to me, and told me that she thought Martin was the cutest baby on the easter board, with his easter bunny ears.

And as the proud mother, I just nod and say "yes, he sure is cute!"

DAY 36--
They moved his feeding tube from his nose to his mouth today. His O2 needs are very high, and they want him to get the full benefit from it. I can tell it bothers him though, it's a bigger tube, and sometimes he's sucking on it like it's a pacifier in his mouth, or he's grabbing and pulling at it.

They increased his feeding from 28mL to 30mL and he's doing well with that. They also use the feeding tube to help vent air from his stomach.

On a good note, the Cystic Fibrosis test came back negative. They're still running a bunch of other tests though, but we're grateful that one is negative! It's such a relief. They're still doing xrays on his lungs to see if anything they're doing has an effect on them.

His weight is up now too!! He weighs 4lbs1oz. Auntie Amber calls him "Little Chubber".

day 33 and 34 (April 13 & 14)

DAY 33--

I went up to the hospital late in the day and spent a few hours skin-to-skin with him. It's so good for both of us, I feel better after doing it, and while I do it, his O2 levels are great.

Here he is back in his bed before I left. I just love those rainbow blankets. Makes things look so fun!

DAY 34--

Matt and I were both able to be up today, and enjoy some time with Martin. He's growing so much. Looking back on the picture when i first held him, and this picture, I can see such differences in him. It's amazing how fast they grow!! even when they're this tiny.