A NICU Flashback

I don't know if this is the way other NICU mom's handle things, but it seems that I had blocked out the first month or so of Greyson's NICU stay. Yes, I can see him in my minds eye in that first room, I look at the photos and I remember it vividly, but there is a level of emotional detachment. I don't "feel" what it was like anymore.

Mainly, when I think about Greyson in the NICU I remember the last 3 weeks. When we were trying to get him to eat orally, when we were trying to get his reflux under control, when we could hold him almost whenever we wanted and when we could see the door to home. That's what I think about. I feel the excitement and joy of finally being close to taking my son home.

Well, that's how I felt until yesterday.

My friend sent a text message saying that her son (Max born at 25 weeks) had his first heart rate and O2 drop. That the NICU staff rushed in to his room to help before he bounced back. The moment I read that, right there in the produce section of Hy-vee, I had my first full-blown NICU flashback.

My heart started racing and that fear, that intense, deep to the bone fear overwhelmed me. I could hear the monitors and smell the horrible soap we used to scrub in. I could see my baby turn blue in my arms all over again. And worse, when I wasn't even allowed in his room because there were so many staff in the room trying to help him. When all I could do was stand by helplessly watching. It was all I could do not to cry right there among the oranges and pears.

I spent the first month plus of Greyson's life living with the fear that I wouldn't get to take him home. That kind of terror is a feeling you only know when you truly fear for child life. It's a feeling I wouldn't wish on my worst enemy, let alone a friend. I'm so sad that they have to go through this. Being a NICU mom is not a club you want your friends to join.

I was literally shaky for hours after talking to her. Not just because of my flashback, but because I know this is just one of many scary moments they will have and wish it wasn't so. I told her it was "normal" because it is. These frightening, awful moments are normal for preemies. I can't even count how many times Greyson's O2 levels plummeted, how many times I saw the color drain from his face, how many times I was scared to the depths of my being. It's normal for preemies - but it is not normal for mommies. It is the absolute furthest thing from normal.

Once I got home I hugged my little boy, who at that time just wanted to run around the house, and was so grateful that we made it through those awful weeks and months. Thankful that he is happy and healthy and while I still worry about him - I don't live with that fear anymore.

And I pray that Max has an uneventful NICU stay, that his drops are few and that he bounces back quickly from them and that soon their NICU stay will just be a memory of the "easy" parts, like teaching your child to eat, holding him close even when attached to wires and seeing that the door to home isn't too far away anymore.




Your gift will support March of Dimes research and programs that help moms have full-term pregnancies and babies begin healthy lives. And it will be used to bring comfort and information to families with a baby in newborn intensive care.

A Favorite Photo

12/21/08

I have decided to start using some of my frozen milk. I've been defrosting it a day at a time and mixing it with some fresh and then freezing the extra fresh in bags instead of the tiny NICU bottles that take up so much space!

So the milk Greyson is getting today is from December 21st, 2008. Every bottle labeled with his name, the date and the exact time it was pumped. Pulling out that milk made me think about that day and it was an amazing day. 12/21/08 was the day Greyson came out of the isolette and was in an open crib! It was the first day I could hold him without needing to get a nurse first. What a great day.

It is strange to think that the day I pumped this milk for him he looked like this.
And now all these weeks later he is happily in my arms, more than twice as big and without the high-flow nasal cannula.

Countdown?

Last night they took Greyson off of the cannula again. He had gone 3 days without desats and was on room air with only .1 liters of flow so they took it off at about 11:00pm Sunday night. He needs to go 48 hours without it without having any destats and then he gets to come home!

Right now we are at 23 hours so my hope is that on inauguration day my little man will come home! What a great day for that.

Oh, and my baby just reached SIX POUNDS! Whoo Hoo!

Yum, yum, yum.

Greyson is still on track for coming home (although we still don't have a date). He is eating 53ml at a time and starting to make a dent in our freezer full of boob milk. I'm heading up to see him now and to drop off more. The kid is an eating machine! He gets this hilarious expression on his face when he wants to eat and then he starts chomping. Seriously, chomping and if we don't get food to him fast enough he starts doing his little half cry. He is so ridiculously cute!

Time with Grandma

My mom came up to the NICU today and got to hold Greyson. I think that they both really enjoyed it. Greyson was totally passed out; he had just eaten a big meal.

It's the NICU shuffle

How does it go again? Oh yeah, two steps forward, one step back.
We just stepped back.

Greyson had some HUGE destats this morning. They don't tell you these thigns in the NICU. They sugar coat - I found this out by reading his chart. And good thing I did because 45 min later the doctor came in and told me he wants to put Greyson back on the nasal cannula. I was floored. He's been off of it for awhile now and when he is not destating he keeps his stats at a happy 99 or 100. But since he dropped so low this morning (in the 20's) and needed serious help to get back (the CPAP - the huge one that forces oxygen into his lungs) it's clear that something needed to happen and really I support any measure that helps Greyson.

That doesn't change the fact that I don't like it. After the doc left I just sat there holding my sweet sleeping boy and cried. When Paxton the respiratory guy came in to fit the cannula I had to leave. It just made me so sad. I got to see his whole face for less than 24 hours and now he has the cannula again and this sets us back on his coming home. sigh.

You'd think I'd get used to the ups and downs of the NICU, but no. The downs are always a shock.

Cuddle Bunny

Yesterday Greyson was all about the cuddling. I loved it! He nursed like a champ and then just snuggled into my chest and went to sleep. He's getting so big that I find myself forgetting that he is still a tiny preemie. He is so amazing and I am so proud of him or fighting so hard to get big and strong. When he opens his eyes they are big and bright and seem to always be checking things out. They are still baby blue-grey and I'm very interested to see what color they end up as.

My Big Man

I call Greyson lots of things when I'm talking to him, but Greyson isn't often one of them. It's usually "My Little Man" or "My Widdle Guy" (I know). Well now I'll have have to rethink those because my little man is not so little! He is officially 5lbs 4oz. More than 2 pounds up from his birth weight 5 weeks ago tonight. He is growing so fast it is amazing and all the more reason for us to want him home - he doesn't seem so breakable. Still really breakable, but not nearly as much as even a week ago.

Since his move to a crib I've been holding him as much as possible and Greyson and I are really getting comfortable together. Nursing helps with that too. Last night he had his whole feed from nursing. In the past we would nurse but they would always give him at least some of his feed via his ng tube. This afternoon at 2:00pm he did it again and tonight at his 5:00pm feeding the nurse gave it to him with a bottle and he did really well! Once we can get all of his feeds done orally we are headed home! We can see an end in sight!

The past 2 days have been really great. They upped his zantac and added rice cereal to his milk to help weigh it down so he won't reflux as much, plus I've been limiting my dairy intake and just getting some more weight on him has helped. I have no idea which of these things is making the difference, and I don't really care. All I know is that Greyson isn't destating as much and is doing great. In fact he only had one destat so far today and it only dipped into the high 50's in the past he has gone as low as the the mid 30's (horribly blue baby at that point). So many signs of improvement.

My wide awake little, er, BIG man checking us out.

All smiles with a tickle from his Grandmom!

Momma half blinded by flashes, but loving my time holding Greyson.
He almost always has his hands open like that, he's really easy to high five.

Not himself today

Greyson hasn't been himself for the past few days. Yesterday was really rocky with lots of destats, some of which were really deep. Today wasn't as bed, but he still wasn't acting like himself. I sat with him for several hours and he only fluttered open his eyes a few times - the rest of the time he fitfully slept. He clearly looked uncomfortable. He also wouldn't nurse. He wouldn't even open his mouth. I spoke to the doctor about this and she decided to run some blood work to see if he is coming down with something.

They took a chest x-ray yesterday and it was clear so we know it is not a respiratory thing (thank goodness). And he is still off the cannula, it's now been over 48 hours so chances are it will stay off! So that is my silver lining.

Just to rule out a cow's milk allergy I'm cutting out all milk from my diet. This is extremely hard because a glass of milk is my snack of choice. Since I spend so much time in the NICU where food or drinks are not allowed except in the parents room I haven't been eating as much as I should. And in the parents room the only provided snacks are crackers that contain soy (out), milk (which was in, but is now out), soda - mainly diet (which is out because drinking anything with artificial sweeteners gives me an immediate headache), and peanut butter! (which is so out that sometimes I don't even go into the room because it smells like PB). So with those kind of options I've been letting way too much time pass between meals. Milk was my back-up, now I'm going to have to find something else. But if finding a new snack will help my baby feel better I'm happy to do it.

He really looked pathetic today and it made me sad that I couldn't make him feel better. Here's hoping we get all this figured out soon so that Greyson can feel better and come home.

So Long 2008 - Hello 2009

Aside from Greyson being born (and his friends Anna and Lily being born) 2008 has not been a good year. I'm ready for it to be only a distant memory. Yes, I know that amazing son was born in 2008 but he wasn't supposed to make his appearance until 2009 - FEBRUARY 2009. Now I'm just looking forward to bringing him home with me.

Here are a few of our immediate plans for 2009:

- Get Greyson home with us! To do that he needs to:

- Stop destating! Yesterday he dropped his O2 level from 100% to 30% in just a few seconds. I was out of the room (cleaning pumping supplies) and Michael was holding him. I know that must have been so scary for him. A blue baby in your arms is terrifying - I know from many, many experiences.

- Get this eating orally thing under control! Greyson is really good at breastfeeding, but he needs to be getting all of his feeds orally but the NICU won't start that until 35 weeks, so we've got at least one more week. Momma can't be at the hospital around the clock (although I would like to). We want that ng tube out. I think his refluxing will get better once that thing is gone!

- Stay off the Cannula! They took it off him yesterday morning because every time the nurse came in it was in his mouth, or to the side of his nose - where it doesn't do any good. And since he was breathing fine without it they took it off. But with his destats yesterday they may put it back, although I don't really think it helps in those cases. Here's hoping it never has to go back on!

- Figure out how in the world we will take care of Greyson once he comes home. He can't go to day care, we can't afford for me to stay home with him full time. And considering that he will most likely continue to have problems with not breathing when he eats, leaving him with someone else who can handle that is not going to be easy.

2009 is going to be challenging, but at least my baby will be home at some point.

Refluxing

I'm becoming more and more convinced that Greyson has acid reflux. Over the past few days I've been studying him while he eats (or to be more accurate: while food is being deposited in his stomach) and the boy looks uncomfortable. About 15 min after he starts eating he gets all red faced and rears his head back and arches his back. He grunts and whines and just looks pained then his stats drop and gets all waxy or purple-gray. It's not a good look for him.

He started on the Zantac yesterday at 5:00pm and it should take a few days to see some improvement. You can bet I'll be watching him like a hawk!

He is still nursing great and I'm hoping that Thursday (when he is 34 weeks gestation age*)we will try bottle feeding too - that way we can see how much he is eating. Right now his is still getting at least 1/2 of his feeds via the ng** tube even after nursing and full feeds through it when I'm not there. I'm looking forward to when they remove the ng tube. The ng tube is just exacerbating the problem because with the tube he cannot completely close his esophagus which allows more reflux. The poor little man just can't win.

*until his due date no one cares how long since he was born - everything is based on gestational age. So right now he is considered 33 weeks old. Babies don't develop the reflexes to coordinate sucking, swallowing and breathing until 34 weeks. When Greyson nurses it goes like this: suck, suck, suck, pant, pant, pant, swallow, suck, suck, suck, suck, forget to breathe, stats drop, get patted on the back, pant, pant, pant, swallow, repeat. It's quite the process.

**ng = nasal gastric

Because We Can't Have Two Good Days In A Row.

It just doesn't work like that. Greyson had a great day yesterday so today is not so great. Greyson has been having lots of spells today. LOTS. I think that his caffine level has not been adjusted to match his weight increase. He has been growing a lot this week and its catching up with him.

I'm just hoping that he grows out of this soon. I can't handle many more days with spells like this.

On the good news side, he is still a great nurser. Keep that up little man!

UPDATE: The nurse practitioner decided that Greyson may have Acid Reflux. So he's starting on Zantac. Crazy.

Splish Splash!

Today we were taught how to give Greyson a bath. It was great. I loved seeing my naked baby! He was just so cute and so alert in the tub and as we were getting him dressed again.

In his tiny tub getting soaped up.

All clean and wrapped up in dad's arms.

Dressed and ready for the day. Love the bed head!

He is still having some spells, but the doctor came in and said that with as severe as his premature lung disease was that all in all his is doing pretty good. They hope to have him off all the oxygen again soon. I'm hoping for really, really soon!

Step Back

But just a little...
They decided to put Greyson back on the cannula for a little while. But with very little flow. I know that it is a good move because he was having some spells and drifting low, but I'm still sad that we have to take this little step back.

An Optomistic Day

Yesterday when I arrived at the hospital Greyson was breathing on his own! No nasal cannula, no nothing! Yep, my baby was breathing on his own!

Now everyone is saying this might not last this time and he'll have to go back to a cannula for a little while. But at least for awhile he was being a rock star baby. I'm just hoping that he keeps it up! We will see when I get up there today.

Until then, enjoy this video of our Greyson without any breathing assistance!


Sorry for my ridiculous commentary. To make up for it, check out these pictures.

"Hey, what's going on?"

"No, no more photos!"

Acid Reflux?

I'm starting to think that Greyson's problems involve some serious acid reflux. His stats dropped and he got really fussy and then he let out a huge burp and seemed much better. They are putting the High Flow Nasal Cannula on him right now and I decided to stop out of the room - it gets really crowded.
If this HFNC doesn't help they may start him on some meds for reflux. I just want something to work.

UPDATE: Well, they put the HFNC on and while the Respiratory Therapist said that Greyson fussed the whole time he was doing much better when I left. I hope he keeps it up!

Trying to Curb The Apnea

Greyson just won't kick these apnea issues. They've maxed him out on caffeine and it never did anything. His extended feedings don't seem to be doing much either. The good news is that his heart rate doesn't drop very often but his oxygen levels sure do (the bad). So today they are switching him to the high-flow nasal cannula. I think it will look the same as the regular cannula, but it will give him more flow and the air will be more humidified (something I could use as the hospital is SO dry).

This is one of those one step back days... We just have to get this figured out!

We'd appreciate any prayers/positive vibes that we can fix this apnea issue quickly and that our little Greyson will master breathing soon.

Apnea, Eating and RSV

Everyone is still trying to figure out this apnea thing with Greyson. The caffeine hasn't had much effect and neither has extending his feedings from 30 min. to 1 hour, or elevating his the head of his bed. So yesterday they tried reducing the flow of oxygen in his nasal cannula thinking that perhaps he is getting too much oxygen too easily and then forgetting to breath at other points. So his flow has been cut by half. I'm hoping he'll show sign of improvement soon. At this time it is his biggest hurdle.

Greyson will be getting his RSV vaccine tomorrow. Having a preemie baby in the middle of winter means he will be especially susceptible to RSV and his little lungs really don't need that. He will be getting a shot every month until winter is over and then start again in the fall. Poor little guy, that is a lots of pokes.

His feeding tube has also been moved from his mouth to his nose. He seems more comfortable this way and is taking a pacifier more easily. It doesn't actually "pacify" him, but it helps to teach him how to suck - a still he will need to master before coming home. Yesterday while up in the NICU I was thinking about how little crying you hear. I've only head Greyson cry once and it was very short lived and fairly wimpy. I wonder if that will keep up when he comes home?

Greyson with his nasal feeding tube. All bundled up and taking a nap.
(Bonus with the new tube - he doesn't try to pull it out as often!)

An Apnea Update

Greyson is still having apnea episodes but they seem to be mainly tied with his feedings. So instead of 30ml given to him over 30min he will be getting 33ml over 1 hour. He will still be doing this every 3 hours. They have also elevated the head of his bed even more, in hopes that it reduces the acid reflux issues. They started this last night and while it is helping he is still having them.

I know that he just needs time to grow out of this phase and that his body is still so small that destating is to be expected, but I really don't want it to happen to my wonderful little boy. I am so looking forward to heading up to the NICU later this morning so I can hold him through a feeding and just spend time with him.

One upside is that Greyson is champ about coming out of the destats. Often he comes out on his own and the rest of the time he just needs to be repositioned a little bit. Since he spends so much time on his tummy (in the featal position - which I can tell you he NEVER stayed in when he WAS a fetus) he has already developed really strong neck muscles and tends to get himself in wonky positions. He's moved his head several times while I've been holding him and it always amazes me... and freaks me out a little bit. It is usually after these movements that he destats because his ariways aren't as clear. I've learned to move him back and keep his chin from getting tucked, but I'm still a little nervous about moving him around too much. He is just so little and so sweet.