Wednesday, November 17, 2010

How Preemie Moms Are Chosen by Irma Bombeck

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. “Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint … give her Gerard. He’s used to profanity.” Finally, he passes a name to an angel and smiles. “Give her a preemie.” The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”

“But does she have the patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I’m going to give her has a world of its own. She has to make it live in her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter, I can fix that. This one is perfect. She has just the right amount of selfishness.”

The angel gasps, “Selfishness?! Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘mama’ for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.  

"A mirror will suffice".

Today is Prematurity Awareness Day.  Fight for Preemies, because they shouldn't have to.

Tuesday, November 9, 2010

Day 121-125 (July 10-14)

DAY 121--
Martin started his 4 month vaccines today.  Allison was his nurse.  I felt bad for her, being one of his primary nurses, she didn't want to have to poke him!  I don't blame her.  He sure didn't like the shots.

He was awake for a few hours, so we were able to work on some exercises with him, working on building his trunk strength.  It's so nice to have some awake time!  We're hoping he gains enough weight that they'll drop his calorie intake down to 24 tomorrow.  My goal is to get him on 100% breastmilk, so I can eventually breast feed him.

DAY 122-
Allison was Martin's nurse again.  It's so nice having a Primary Nurse, who knows Martin so well.  He gained enough weight last night that they dropped his calorie intake to 24cal!  Woohoo!!  He now weighs 8lbs 11oz.

He got his last vaccine today, so it's nice to have that behind us.  And I gave him a bath.  He actually seemed to like it!  I've never had him like a bath before.  I thought it would be good to be nice and clean before his surgery.  That, and during the healing time, he can only have sponge baths anyway.

DAY 123-

Martin is now four months old.  Good grief!  I really never thought we'd be here that long.  One of the night nurses that has been taking care of Martin lately made him a little cd with Kenny Loggins "Return to Pooh Corner".  She's been having him listen to it, and he's really liked it.

They moved us to room 1 today, to prep him for his gtube placement.  He could tell something was different.  He was restless, and not as comfortable as normal.  They put him in one of the warmer beds, and stored his crib in the isolation room.  So I guess he's now been in every room!  He's made his rounds in the NICU. :)

DAY 124-

Today was the surgery.  Martin went NPO (not being fed) after his 6am feeding.  They placed an IV in his hand, and then we got to snuggle for a while.  at 11am, they intubated him, and placed him on a ventilator.  I left during that process.  They have to give him a sedative that immobilizes the body, so they don't fight having a tube sitting in their throat.  When I came back he was all situated.  

It was so weird seeing him breathe normally.  Martin has always retracted when he breathes.  He skin gets sucked in between the spaces of his rib cage.  It basically shows that he struggles to breath.  I've never seen him breathe otherwise though.  so imagine how weird it was to see him breathing like a normal person.

He woke up a little early from the sedative, and was acting uncomfortable (I know, who would have thought?) so they had to give me another dose earlier than they thought.

it's also weird being in room 1.  That's the room where all the new arrivals come.  It's connected to the delivery room, and they just pass babies through the window.  That's what happened when I had Martin.  I didn't even get to see him, they just wisked him through the window into the NICU, and got him breathing.  But Martin is HUGE compared to all the other babies in there.  I'm sure people were thinking that martin was a new baby who just has a complicated birth.  I wanted to put a big sign over his bed saying "I'm the oldest baby in here, and have been here for 124 days!!"

Dr. Yoder, and Dr. Jackson started the prep for the surgery at noon. I got to watch them set up the equipment they were going to use, and try to not be in the way.  Then I signed the papers ok-ing the surgery and left.  I sat in a conference room (actually, it's normally the bereavement room, or the room the doctors take families when they have to give bad news) and went a little crazy worrying.  Matt slept.  It's hard to have a child so small have to go through so much.  Martin has been through more than I have been through medically.  As a parent, you never want to see that.  You never want to see your helpless infant subject to so many things. 

and here's Martin's g-tube.  It's called a PEG tube.  Later on, he'll get this one switched out for a MIC*KEY button, which is much like a beach ball valve, and doesn't stick out of his stomach like this one. 

We saw him for a few minutes post-op, enough to give him a kiss, and have the doctor tell us that everything went perfectly.  Then we ran over to the Children's Hospital next door for their g-tube class.  It was very informative, but very overwhelming at the same time.  I'm probably going to have to take it again. 

The plan was to have him extubated and off the vent by shift change, in between 7-8pm.  He just didn't want to give the vent up!  I'm sure it was nice to get a break from all the work he has to put in to breathe.  It was hard to watch him struggle against the vent at the same time.  He was trying to cry, but it was like watching a mute baby.  He was crying, but not a sound could come out of his mouth.

He was finally extubated my 8pm, and moved to room 2.  He happens to share this room with a term baby, that's 1 day old.  They have a LOT of visitors, and it's actually quite annoying. 

The night nurse was reluctant to let me hold Martin, but I was very adamant.  After all he had gone through that day, to tell me that I couldn't hold him?  Yeah, all hell would have broken loose in that place. 

His oxygen levels were looking good too.  3 liters on the high flow, at about 40%, which is great for having just come off the vent. 

DAY 125---

They restarted Martin's feeds today, as well as his meds.  They are slowly building the amount back up, depending on how much he has left in his stomach.  He does need some venting to help him get the extra air out of his stomach. 

The GI surgeon is very pleased with how well the surgery went, and everything about the tube.  That's always a good thing!

One of the OT's took a video of Martin breathing, to show what "work of breathing" is.  Martin is a prime example.  I know before him, if someone asked me if my child had "work of breathing" I would have thought to see panting and wheezing.  Martin has none of that, but he just works hard, and has moderate retractions.  At least with this, he's able to help teach others what to look for.  I see it as something good coming from him staying in the NICU for so long.

Saturday, October 23, 2010

Day 116-120 (July 5-9)

DAY 116--Well, Martin was bumped down to 2 1/2 L today. if he tolerates that well, (keeps the O2 below 50%) then they'll keep him there. If not, he'll be put back to 3L.

We worked with the paci a lot today. It's hard, because he's not tolerating it very well. He gags whenever anything is put in his mouth. Eventually he'll take the paci, but it takes a lot of time and patience.

They also took his summer time baby pictures. Like when he had his pictures take with the bunny ears, they put on the wall, these are pictures of the babies when they're all decked out in summer outfits. He looks like a little train conductor. We better not be here for the next set of pictures. . . .halloween. . . .

DAY 117--

I love this picture. Martin's just totally sprawled out in his bendy. Yeah, that thing ain't containing him no more! :)

His feeds were increased to 5 7mls, and he's tolerating it pretty good. He was awake and happy for a while, which was awesome!! He played with Vickie, one of the OT's, and with Teri, his nurse for the day, and just a happy boy.

We created a plan to get him home. His g-tube can be put in at the bedside, so he doesn't have to be transferred to the Children's Hospital next door. They're hoping to just be able to sedate him, and not have to intubate him. If by chance he DOES have to be on the vent, the doctors who know him best can help get him weaned off it fast. With martin's lung condition, we're afraid he can become dependent on it very quickly. He already works so hard to breathe, that given the break, he'd probably welcome it.

He will be coming home on a high flow oxygen system. it's one of those things that rarely happens, (like the gtube) which means Martin thinks he's got to give it a try. "Never happened in this NICU? Well, let me show them a thing or two. . ." Apparently the Children's Hospital has done it before, so they're trying to get it worked out for him. He'll also continue with the nebulizer treatments at home. They said it's good to have on hand, because if he gets sick he's probably going to need more treatments to keep his lungs open.

That's as far as the plan's been worked out, but it's a plan!! Maybe Martin won't be the first toddler in the NICU.

DAY 118-
Martin's feeds were bumped down to 26cals.  It's awesome!  He's just gaining weight so great, he doesn't need as many extra calories. 

We're still trying to get the GI Doctor to come over and talk to me about everything.  Hopefully it will happen soon.  The sooner the better!

DAY 119-
THE PLAN IS SET!!  Finally. 

I thought it would never happen.  The gtube will be placed on tuesday the 13th.  If they can get Martin's home oxygen system figured out, he could be home in a week, the 21st. 

My birthday.

How awesome would that be?!

I went to the Parent-to-Parent group tonight, it was so nice to spend time with the other moms.  We've become so close to each other, as we all struggle through everything. 

After the group, I went in and met Brandy's miracle girl.  She was born weighing 15oz.  Brandy actually lives close to me, and we were at the same clinic, and transferred from the same hospital.  It's nice to have that little bit of connection with someone else here.

Her baby is beautiful, and so so so small.  It makes Martin seem like a giant.  And it makes me count my blessings that we stuck it out on bedrest for so long, otherwise he could have easily been the size of her girl.

DAY 120--

I finally got to met the surgeon today.  He's a very nice man, and he explained how the surgery will go.  he actually drew me a picture.  Basically they'll sedate him, and put him on the ventilator (which scares me, considering how hard it is for him to breathe anyway, I'm worried he'll have a hard time getting back off the vent!) and insert a little flashlight/camera down into his stomach.  They'll find the right spot and cut from the outside.  Then attach something to the light, pull it back out.  Attach the gtube and pull it back into his stomach.  It ends up opening up inside his stomach, about the size of a quarter, and that keeps the tube in his tummy. 

I'm trying not to think of it too much.  But I have to think about it, otherwise I start paying attention to the other babies.  There's a set of triplets in the same room as Martin right now.  Well, two of the three.  The brother was transferred to the Children's Hospital because of a serious problem.  He's being transferred back though, because there is nothing they can do for him.  They're bringing him back to spend some time with him sisters before letting him go.  It breaks my heart, and I hope we're somewhere else before that happens. 

They're still working on getting the high flow system figured out for home.  I hope it gets figured out soon!  It's frustrating just playing a waiting game. 

Martin also weighed in at 8lbs and almost 10oz!  He's growing good!  They increased his feedings to 60mls a feed which is awesome!

Tuesday, August 31, 2010

Day 106-110 (June 25-29)

DAY 106--

Four liters high flow. I really just can't understand it. The ENT came to look at him, and they think everything sound ok. They did suggest the idea of a CT scan of his throat and lungs to make sure everything has developed properly.
The nurses are trying to keep him as upright as possible to help him breathe better. It's frustrating to see nurse that have hardly ever had Martin, tell me what he likes and doesn't like. He's my baby, not yours! The mama bear in me really comes out.

The next thing in the plan is to have a pulmonologist come and look at him, see if they can decipher anything.

Sarah made martin a sign to hang about his bed. "Things I Like"--it has a list of things nurses can do with Martin to help him respond, and challenge him a little bit. This way nurses aren't just shoving paci's in his mouth.

DAY 107--

Today was the care-conference. It was really nice, but as the same time, didn't cover anything I didn't already know. And they really didn't cover what the game plan was.

The pulminologist is coming in two days to check Martin out. They're going to do another ECHO, to make sure his heart isn't working to hard still. They were able to bump his O2 down to 3 1/2 L, which is better than 4L.

As for his growth, his weight is in the 10th-%-tile, his height is in the 3rd-%-tile, and his head is in the 50th-%-tile. Yup, definitely my child, with a head that size.

One of the goals we set was to make sure feeding is a happy experience. Don't force him to take something, if he takes 2mls, that's great!

It was nice to feel like there are a lot of people in our corner, rooting for Martin. We had a lot of support there, which was great. After the official meeting, the nurse, NNP, and Dr Chan left, and the rest of us discussed the future. It's a gtube, there's just no getting around it. Martin is going to have long term breathing and feeding problems. Dr Chan was so great to not mention it, knowing that the idea really bothers me, which I appreciated. But it's going to be the best thing for Martin, and that's really what it comes down to.

After the meeting, we went to a NICU baby shower, put on by the parent to parent group. It was so fun. A baby shower is just something a NICU mom doesn't have time for! It was great to get out and meet a few of the other moms I didn't know. and it's nice to realize that we haven't been here the longest (it just feels like it). I almost didn't RSVP to it, because I had hopes we would be discharged before it. No such luck.

DAY 108--
Martin is still holding steady at 3 1/2L O2. I think they're going to move slowly on the weaning process, which is good. They also started a sedative--anti-anxiety medication to help keep him calm. He just doesn't have the lung capacity to be able to cry very much. so when he gets worked up, he can't breathe, he desats, and they have to turn his O2 up.

The problem with this med, is it completely knocks him out cold. Nothing wakes him up.

For the Sunday night measurements, he weighed in at 7lbs 6oz, and was 19 1/2" tall. That's about how tall Katryn was when she was born.

DAY 109--

Still on 3 1/2L high flow. The ECHO looked good though, his heart isn't working too hard, which is great. The pulminologist came super early and said that it looks like he has severe chronic lung disease.


I wish something conclusive would happen. I think that's what bothers me the most, is there is really no concrete answer why he can't breathe good. Even the experts can't figure it out. I'm pretty much to the point where I don't care what it is, I just want an answer.

The Pulminologist is starting some new medications for Martin. Another inhaled steroid, and Singular. Hopefully these will help open his lungs up and heal them.

As for therapy, we're working with the paci and milk right now. Trying to reteach him to open wide again, and give good, deep sucks. The kind of sucks that will make breastfeeding possible.

DAY 110--

The Singular treatments were started. It's basically a powder they mix with some milk. it's really easy, something I can do at home, since he'll be coming home on it. He's on 3 1/2L still, right around 40% which is pretty normal for him.

This anti-anxiety med they're giving him is ridiculous. The poor boy can hardly open his eyes he's so out of it!! This is NOT a normal Martin. We're going to try to get the doctors to decrease it to every 12 hours, instead of every 6, so we can have some awake time.

Sarah and I created a "play plan" for Martin. Things to help his developmental skills through playing. We're working on tracking toys back and forth, and bringing his hands together with a toy in each one, to hit together.

Sunday, August 15, 2010

Day 111-115 (June 30-July 4)

DAY 111---
Martin is still really, really sleepy. Not as bad, since they adjusted the medication, but look at those eyes! He's so tired. We worked on getting him 'readjusted' with the breast shield. It didn't work every well. He just can't breathe very well. Hopefully these meds will help getting his breathing under control, and we can finally focus on breathing. I want to be one of those moms that just has a 'feeder-grower' baby in the NICU.

They increased his feeding a little bit, to 51mls. And they're talking about increasing one of his neubulizer treatments to a couple times a day. This treatment dilates his lung tissue, so it can help him breathe. Hopefully if he gets that treatment before he eats every day, it can help him nurse better.

And Sarah brought me some vanilla extract that she MADE herself. I'm so excited to try it out!!

DAY 112--
Martin's feeds were increased again today--he's now at 52mls. They move slow with his feeds, because they want to keep him fluid-restricted. He's also just 2 grams shy of 7lbs 14oz! That's awesome! Almost 8lbs, I can't believe that a few months ago, I had a little 2lber. He's also now the 2nd oldest baby in the unit. Not really a goal we're striving to hit. . .

his oxygen is sitting steady at 3 1/2L at about 40%. Hopefully soon we can start getting him weaned back down. I've been working with the paci and milk with him. Sometimes he's good with it, other times (like today) he spits up. We also have to swab his mouth after his neublizer treatments and that causes him to gag and puke. The poor kid.

DAY 113--

They started his albeteral neublizer treatments every 6 hours now. That's the one that opens his lungs up. His oxygen was down to 3L today, so I think these medications are working!

Sarah came and worked with us again. She taught me some exercises that can help open up Martin's lungs. Things like trunk rotation, stretching his arms and shoulders down, and kind of pulling/stretching his rib cage down. Things just seem to be pushed up higher than they should be, so we're going to work on that.

And I love this outfit on him. It's probably the only time he'll get to wear it, since it's a preemie outfit, and those don't really fit him any more. If you could see the back of it, it has a large 'X' on a back-pocket. I love it!

We played with the rings and some other toys. He's starting to get the tracking down pretty good, which is awesome. We're also going to work on some positive oral stimulation, with the rings, and kisses, and other things that aren't invading his mouth.

DAY 114--

We had some awake time today!! it was awesome, Martin was up and happy for about 2 hours, and then he CRASHED. I can't blame him, it's a lot of work when you can't breathe. We played together for a little while, working on bringing his hands to his mouth. I thought, if he can feel his mouth on his hand, and his hand in his mouth, he might correlate that this is ok, and not freak out when things are near his mouth.

We tried breast-feeding a little bit, and he took a few mls, but not very much. But he did SOMETHING which is better than nothing. He seems more comfortable lately, and not breathing so hard. Something is working, I just wish I knew which one is was.

They stopped his mylicon for his gas. Hopefully he handles that ok, and we don't have problems. He also now weighs 8lbs and 1/3oz. We broke 8lbs!! woohoo!

DAY 115--
Happy 4th of July! Martin is celebrating in style, with a flag shirt. There was a lot of 'talk' about the future plans today. They talked about a gtube, which I still don't want, but honestly, Martin's feeding problems are going to be long term. As long as he can't breathe very well, he can't eat orally very well. A surgeon from Primary's is going to come talk to me, and discuss it all with me before we make a final decision.

They also talked about decreasing his calories. He's been gaining a lot of weight lately, more than they would like. That would be awesome! He's on 30cal right now, so they might drop him to 27cal.

We also noticed that Martin has a higher residual (leftovers) in his tummy after he gets his Singular med. I wonder if it's just harder for him to digest. Very interesting. . .

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.