Made of Gray

201 Days in the NICU

The New Normal

Raising the Rare Child, 201 Days in the NICUHolly D Gray12 Comments

Normal? This is the new normal we have been craving for months. Caleigh is home!

Our last family photo in the NICU

Load'er up!

Here's how our last day in the NICU started......On Wed. we got to the hospital around 9am and Eric and I preceded to pack all of Caleigh's many...many things. When your baby is in the hospital for 6 1/2 months things seem to accumulate quickly! We waited on doctors, waited on our home health nurse to bring Caleigh's IV pump, talked to our case manager many times, looked at schedules, waited on home health some more, and then started saying our goodbyes. When home health showed up it was 4 o'clock. We spent the next hour going over Caleigh's IV pump, hanging her new TPN and packing up some more of her stuff. We said some more goodbyes, cried a lot, smiled a lot and then made our way to the car. When we were finally pulling out of the hospital it was 5:50. Whew! We were already tired and then........

Caleigh's very first car ride!

She didn't know what to think.....so she went to sleep

We pulled into the garage, got Caleigh out of the car, had to hook up her feeding bags asap, she had meds that were due as well. After Eric unloaded everything we had to set up the pumps on the IV poles, we ordered pizza, home health made a huge delivery at 8:30pm, we gave Caleigh her first bath at home around 10pm and then we preceded to play the up an down of trying to get Caleigh to sleep. 1 hour here, 2 hours there; needless to say we are officially broken in as new parents. On top of her crazy NICU schedule Caleigh has to get meds around the clock. Babies without short gut tend to eat every three hours and sleep between feeds, but Caleigh's belly is always full and she has never had a normal schedule so our goal is to work towards one.

Of course, we stopped to take the front door picture!

Oh, and I failed to mention that I got horribly sick that night! Some kind of stomach virus! Eric was such a trooper and stayed up with Caleigh all night while I was up and down and back and forth to the bathroom. Did I say it was horrible yet?? Cause it was! The entire time Caleigh was in the NICU I was there every single day and I didn't get sick once, but the night that my NICU stress was relieved I guess my body decided to give in. I'm worried about Caleigh getting the bug but so far she seems to be doing well. My mom came over on Thursday and helped us out. Unfortunately the whole day is a blur. It could have been sleep deprivation or being sick, either way I don't recall much, but I'm happy to say that I feel all better now. Whew!

Caleigh is doing really well, Eric and I are so excited to have her home, but I can't stress enough that our home now looks like a hospital. Supplies everywhere, IV pumps, poles, bags and all her medicines........

Here is just a glimpse of Caleigh's med schedule.......

6am - Mylicon, Reglan, Ursodial, Zantac

8am - MUD (baterial overgrowth antibiotics, 3 meds)

9am - Prevacid

Noon - Mylicon, Reglan

2 pm - Ursodial, Zantac

6pm - Mylicon, Reglan

8pm - MUD

10pm - Ursodial, Zantac

That's 19 doses of medicine per 24 hr period.

During all of this we are turning Caleigh's feeds on for 4 hours and off for 1 hr. We are super busy trying to get used to the schedule.

But you know what? Despite all the 'hospital' that we had to bring home, we are extremely thrilled and still a little shocked that she is actually at home with us. This morning I sat in bed holding Caleigh until 10am, in my PJ's, drinking coffee and just soaking up the moments that I have dreamed of for so long.

PJ's, yep I'm not getting out of them until Monday when we have our first doctors appointment. I have been dressed and at the hospital for 6 1/2 months and for a few days, at least, I refuse to 'get dressed'......

I'm so excited that I get to hold Caleigh when I write on the blog dedicated her.

Of Course there is lots more to talk about.....until next time.....

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6mths2wks5days, 201 days in the NICU, 29 wks........

201 Days in the NICUHolly D Gray16 Comments
Today, Eric & I welcomed Caleigh home from the hospital!
As soon as things settle down a bit I will post all the details plus the photos. Thank you for all the continued prayers towards Caleigh's homecoming, they definitely worked. We still have a long, long road ahead...... but as of right now our little angel is sleeping in her own crib for the very first time and we have discovered that living in the moment is a precious gift.

XOXO, the gray's
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One Year Ago

201 Days in the NICUHolly D Gray3 Comments

Yes, two, ..... I took two pregnancy tests....

you can't always believe the first one...

that's why they come in packs of 2 or more!

On February 22, 2007, I found out that we were pregnant. It was a Thursday night and Eric was at the firestation. I had to hold my exciting news for a whole day until the next night when we were both home from work. Thoughts raced through my head during the day. A baby! I had always wanted to be a mom...always. Eric and I had been talking about having a baby for a year. I had stopped taking birth control & started taking prenatal vitamins a year earlier. We had bought a house, I had finished my degree, Eric had the job of his dreams and we knew that we were ready after 6 years of marriage. We tried to get pregnant and it worked the very first month...oh my gosh....the very first month! There was a human, our child, growing inside of me. I was 4 wks and a few days along from my calculations......what a whirlwind. When Eric came home the next night I told him our news with a huge smile on my face, we hugged, kissed and talked about how excited we were to be having a baby.

Who would have thought that one year down the road we would be where we are as a couple, as parents. To have a beautiful baby girl, to have been through the struggles that we have already faced as parents. Looking back I can't even imagine our lives being this way. Eric and I will always have the 'what if's' in the back of our mind, but we LOVE Caleigh to pieces and we can't think of our lives without her. We have a miracle baby girl, we are the parents that I always imagined us being and we have a strengthened relationship through our strifes. The past year has been nothing short of a true blessing.

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Sunny day in the NICU

201 Days in the NICUHolly D Gray4 Comments

What is this stuff they call sun?

Ok, so I will start with Caleigh's feeds. Here we go...

Last post, we had stopped her continuous feeds once again. The next day we started up again at 2ml an hour. As of today we are at 4ml an hour and tomorrow we will go to 5 ml again. We started 'cycling' if you want to call it that today. This means 4 hours of continuous feeds and 1 hr off, 4 hours on, 1 hr off. We are trying to see if this will give Caleigh time to move the formula through during this break time and give her tummy a rest. So that is the scoop on the never ending drama of Caleigh's feeds.

On to the rash......it's almost gone. Just a few little speckles left over and in a day or two it should be a thing of the past.

On to the TPN, aka... Caleigh's total source of nutrition. With the GI docs advice we have decided to stop cycling Caleigh's TPN off for 4-8 hrs a day. She still isn't growing well and it doesn't make sense to take her nutrition away during the day when she really needs the calories. We are still giving her Lipids (fats) only 3 times a week. Lipids are really hard on the liver and even though she needs the fats to grow we are going to hold off on that. We are still holding out for Omegaven which would replace the Lipids. Once we get on Omegaven Caleigh will be able to have fats everyday. Since Eric and I expressed the importance of Caleigh growing her TPN has been adjusted. She gets more calories, sugar and more time on the fluid. As a result, Caleigh's hair has started to grow, she seems to have more energy, she appears to be sleeping better and she has started bringing her hands up to her mouth and cheeks! It's amazing when someone is malnourished because all their body can focus on is growing and surviving. It's been nice to see these small changes. Everyone assumed that as soon as we added the calories and sugar back into the TPN that Caleigh's liver levels would get worse, but to our amazement her Bilirubin this week is 1..... which is absolutely a god send!

wow those eyes are big

On to the long list of meds......

I'll kinda briefly explain SBBO, short bowel bacterial overgrowth. In Caleigh's tiny belly she has damaged areas of small bowel. These areas don't push and pulsate like they should. This is where her motility problems come in. Once formula reaches these areas, it sits for longer than it should because the muscles are permanently injured. This brings on the bad bacterial overgrowth. Caleigh has been on many antibotics, probiotics, etc. for this in the past. We've tried everything and that darn bacteria shows up every 1-2 wks. This makes Caleigh very gassy, makes her have watery stools and is the reason why she gets a big belly every time. So what to do? Our GI docs consulted with Cincinnati Children's and they came up with an antibiotic mixture that they use on their 'tough' kids. Tobramycin, Colistimethate, & Amphotericin......otherwise known as MUD, an intestinal decontaminate. These are normally very serious IV medicines, but in Caleigh's case she gets them through her G-button. Caleigh will be on the MUD for 10 days and then off for 10 days to see if it keeps the bacteria at bay. She's on day 3 so we will see how it goes in a week or two.

We are sending Caleigh's 3 ft stack of medical records to Pittsburgh Children's for evaluation. They are going to deal with our insurance and then we will try to set a date to take Caleigh up for an evaluation. As soon as I get more details, I will share the news.

I was asked today "what have you learned from Caleigh?" Of course my immediate response was patience, but then I thought about it all day and added some more to that answer......

patience, understanding, coping skills, bravery, strength, endurance, I've learned that I can't control everything, life isn't always fair, and life is definitely uncertain at best, live each day, God is everywhere, and most of all... unconditional love

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