Made of Gray

Gastroschisis

Caleigh's 10th Bowel Surgery

Raising the Rare ChildHolly D. Gray1 Comment

Caleigh went back for her 10th bowel surgery this morning at 9:40am. This makes a total of 13 surgeries in the books for our sweet eight year old. 

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This morning Caleigh didn't want to read the prep book that ChildLife had given us. We spent our short morning together getting her cleaned up, washing her hair and listening to a lot of music. Caleigh wanted to get Noel ready just the same. The nurses brought Noel her own gown and she even got a name and allergy band to match Caleigh. We played her favorite tunes up until it was time to send her back. She was hesitant, but happy before we watched her roll down the hall. 

When we got to pre-op, Eric and I pushed for a PICC line before surgery. So they prepped the operating room for a PICC placement first. The line was in by 11am. We wanted this instead of peripheral IVs because Caleigh's veins are terrible. The IV that she had in her arm already looked like it wasn't going to make it. No one was opposed to it and felt it was a good choice. The PICC line gives the surgery and anesthesia teams access for medications, blood products and any emergency interventions that a basic line can't handle. It was a safe spot for us. 

The anesthesia team placed an epidural for pain management. This is the first one Caleigh has had and we are hoping that it helps with the intense pain she will feel. Before Caleigh went back to the operating room they gave her versed through her IV to help calm her down. 

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The actual procedure and opening started around noon. With each update that came through, every 90 minutes, we heard the same thing... "Caleigh is doing well, they are working through the adhesions." Adhesions being that anytime you touch, move or remove intestine it begins to scar and "stick" to itself. Yours and mine are free floating, Caleigh's guts are a big ball of adhered tissue. The surgeons have spent the day cutting them away which is a very long and tedious process. Caleigh's intestines were nicked and stitched back up throughout the process. 

At two points they thought they had found the strictured area. When they brought in Caleigh's GI doctor to scope the free intestines they discovered that they hadn't found it. They sent him on his way and continued working through the adhesions to find the area in question.

By 6:00pm in the evening, the surgical waiting room was closing and we were sent up to 7 South, the Medical and Surgical ICU, where Caleigh will remain until she moves back to 10 South.  

At 6:30pm they gave her one unit of blood. We were told that she hasn't lost a lot of blood considering the procedure and operating time, but she did need some with her hematocrit being 26. 

By 8pm the surgical team was still operating, working on adhesions and searching for the narrowing. She was given another unit of blood. 

At 11pm we were speaking with Caleigh's GI doctor. The team had called him back in because they were sure that they had found the spot. He went in with the scope and confirmed that they found it. His work was done for the evening. 

By 12:30am Caleigh's surgeon came in to talk to us. Her surgery was over after 15 hours in the operating room. He ended up leaving the narrowed area and doing a strictureplasty to save the length and bloodflow. They didn't measure the length while the intestines were out because they left the STEP areas of small intestines intact and still adhered. The narrow area was actually up behind her spleen and colon in a difficult area which is why it took so long to get to it. Caleigh's thing is to scar... heavily, which works in her favor because it cuts down on the risk of malrotation as a complication. She will spend the night with the breathing tube still in place and they expect for her to swell for the next three days. He doesn't think that she will develop compartment syndrome again.  He took a liver biopsy and said that from the outside it looked good. Her intestines will go back to being scarred. Like they were never in there today. Once the breathing tube is out and she is urinating normally we will be moved to a room. Right now he believes that she will be in the hospital for two weeks as previously planned. 

At 1:30am Caleigh was up in the ICU and we were able to go in to see her shortly after. 

Eric and I are exhausted. I'm guaranteeing typos and grammar issues on this one. We've both been up a few hours shy of 24 hours, but we are beyond thankful for Caleigh's medical team and her wonderful surgeon and GI. Thank you again for all of your thoughts, prayers and amazing words of encouragement. Your support has carried us through today and the past week. Thank you for caring and loving our girl. 

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Pedi + Photos

Raising the Rare ChildHolly D Gray9 Comments

Caleigh's first Christmas!

For those that didn't know, Eric & I left the Christmas tree up for Caleigh. We didn't expect it to stay up until March, but what tha heck! We put her in her 'baby's 1st christmas' outfit and opened up the gifts that Santa had put under the tree. Her face pretty much says it all......

We played by the tree the next morning too!

Not to worry, the Christmas season is now over and won't be showing back up until December, where it belongs.

So today was Caleigh's first Pediatrician appointment. We spent all morning packing bags and equipment and then loading the car for our 1:45 appointment. We got to the appointment and the first thing we requested was to be taken to a room immediately. We don't need Caleigh picking up any bugs at the doctors office. One thing is for sure....when you come in flashing tubes and wires hanging from your baby, things get done really fast! We were taken to a room where we filled out paperwork and waited for the doctor. Caleigh weighed 10lbs 1.5 oz and is 22 inches long. It's funny cause when we first showed up they said 'oh a newborn appointment'?...... I forget that Caleigh is sooo small for her age and she does look like a 10 lb newborn. Caleigh got her 6 mth shots and we don't have to go back until she is 9 mths old. We ended up really liking our choice and hopefully she is one doc that we won't have to see soon.

Caleigh has been doing really well. Her tummy looks great and we have an appointment with our GI doc on Thursday so I expect us to raise her feeds up. Our last dose of the 'MUD' antibiotics was given this evening. We are going to try to make the 10 days off so that we can cycle it on & off. We don't want her to become resistant. She isn't sleeping very well by herself and we usually have to hold her the whole time. As soon as we get her laid down she has retching spells and then she is wide awake again. Tomorrow we have an appointment with Caleigh's surgeon but before that we are taking her to get an ultrasound on her left hip over at Cooks. During Caleigh's discharge evaluation our Neo noticed some clicking in her left hip area and wanted us to get it checked out. As with the previous 'healed' fractures that were noticed, this is all a result of her prolonged TPN usage. Hopefully it is nothing and that is what we are praying for.

Some interesting Caleigh info:

-Caleigh loves to watch the ceiling fan go round and round.

-She has started to 'bat' at us & toys with her left (her weaker) hand (but only when she wants too)

-She seems to love her car rides, but only when the car is actually moving and the faster the better!

-Hoosier & KoKo love Caleigh! Hoosier cries when Caleigh cries......it's too cute

Obviously, things have been nuts in the Gray household! Eric and I read every comment that you write and we really do appreciate all the thoughts and prayers for our family. I know everyone has been calling and I am trying to get back to everybody asap....but Caleigh has NO schedule and we sleep when she sleeps, which hasn't been much lately. We are usually holding her 24/7 and I have nicknamed her the Velcro Baby! At least we are now able to hold her 24/7 in our home........

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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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