Made of Gray

TPN

Pitt Bound

Raising the Rare Child, Traveling w/ DisabilitesHolly D Gray6 Comments

The Gray Family travels north!

This Sunday, April 13th, Eric & I will be taking Caleigh to the Children's Hospital of Pittsburgh. We will arrive on Sunday afternoon and then check into the hospital Monday morning. After Caleigh is admitted on Monday, the small bowel transplant evaluation will begin. They will do MRI's, CT scans, a complete blood workup, and lots of other fun stuff. We've decided to take Caleigh to Pitt because it is a world renowned transplant center. We aren't even sure that Caleigh is a candidate for transplant, but they have agreed to evaluate her situation. Above all, this is a chance to get a second opinion on that little tummy that seems to puzzle the best.

New doctors, surgeons and nurses. Scary, actually. All of Caleigh's 'team' knows her so well and we know that this will mean stepping out of our comfort zone and trusting a whole new crew. Eric and I have been thinking about this famous 'second' opinion for some time now and we believe that this is a positive move. Hopefully, we can learn more about Caleigh's situation and the possibility of a transplant.

Caleigh has really started holding her head up. She seems stronger and more alert. Caleigh's coos have come a long way and she makes us smile more and more everyday.

Here are some helpful links regarding our trip:

CHP Transplant

I CARE

Intestinal Transplants

Thanks to some generous donations (THANK YOU) we were able to buy a laptop. I'm typing on it right now, laying in bed, watching Caleigh sleep. So hopefully, I will be able to get on here a little more often. Plus there will be lots of updates when we arrive in Pitt.......which by the way is supposed to 34 degrees!

Wish us luck and pray for a smooth transition with answers galore.

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Houston......we have a Totally different baby!

Raising the Rare ChildHolly D Gray3 Comments

Time restraints for blogging have been very restricted. If were not sleeping were watching Caleigh breathe while she sleeps. Plus all of her daily cares which leaves us with no computer time. So, please bare with me loyal readers.....

Ok, so on to those stories and news I promised so many days ago.....

The biggest news of all:

When I say different, I mean TOTALLY different! Caleigh is almost sleeping through the night and she is so much happier! So much so, that the third day we were in the hospital Caleigh started cooing at us. See the amazing video below! Almost 8 mths of nothing but cries, lessen the seizures and we have a happier, more content baby. We couldn't be more excited about her progress.

Our wild trip to the hospital came to an end exactly one week after it began. Which believe me was long enough for all of us. As I said above Caleigh's seizure medicine,

Phenobarbital, seems to be working wonderfully. We take Caleigh back to the doctor for another

EEG on the 24th of this month to see if the medicine is working. As far as demeanor, Caleigh seems like a totally different baby. Different cry, different posture, different behavior......Different, but in an amazing way. She acts like she feels so much better. Sleeping like a champ and catching up on all that rest she had lost in the last 7.5 mths. Content not being held 24/7 and enjoying her toys, swing, and bouncy seat. Were just amazed and that's the only way to describe it.

Here's Caleigh getting her first EEG

Here's Caleigh in her hospital bed......sleeping without being held!

About those seizures... The docs seem to think that Caleigh is having Complex Partial Seizures. You can read the link about the kind of seizure, but in a nut shell, we can't tell if she is having one. Typical symptoms include: staring, repetitive motions, saying the same word(s) over and over, and losing consciousness. These are all very hard to tell in a baby. During our research, we learned that a person can have 200-300 of these electrical malfunctions a day. During her 30 minute EEG Caleigh had 3 seizures and they were firing from two different sections of her brain. So this explains a lot of Caleigh's behavioral issues.

Caleigh was on Phenobarbital almost since birth until the end of January. A side effect of Phenobarb is lowering liver bilirubin levels. Once she was taking in enough formula, they were able to take her off the low dose of Phenobarb and start Ursodiol for liver purposes. Phenobarb builds up in the bodies system and tissues. Which to us explains why daily life with Caleigh was just getting harder and harder. The Phenobarb was slowly getting out of her system and the seizures were taking over, full strength. Caleigh still gets upset with tummy pain, but we can actually tell that it is stomach aches now. She hasn't hyperventilated since the day before we went into the hospital. We're just happy that another piece of the puzzle is down on the table and now we can monitor it too.

What's this.....oxygen....at home? Yep, little miss just didn't want to give up her oxygen at the hospital. We're on 1/8 a liter continuous except for bath time. It's just a whiff of oxygen, but when your getting over a cold and your lungs are teeny tiny, you need the whiff. Caleigh has an appointment with her lung doctor on May 5th and then we will re-evaluate the situation and see if she still needs her beautiful, new necklace...no headband.....no earrings...... Whatever it is, it's definitely a fashion statement!

Grabbing Daddy's Beard

Eric and I brought home a blood pressure machine. We take Caleigh's BP at noon and midnight and then give her Enalapril. She was on this med in the NICU so we asked that she be put back on it instead of searching for the perfect BP med again. We now have an Nephrologist, which is a kidney doctor. Caleigh has an appointment with him in two weeks. I think with the seizures under control Caleigh's blood pressure and heart rate have been a lot better, but she is still requiring the medicine.

We got an apnea monitor that we hook Caleigh up to every night that watches her breathing and heart rate, and I'm happy to report that it hasn't gone off once since we have been home. Super!

The oxygen tank, IV pole with three pumps and three bags all attached to tiny Caleigh makes it really hard to get around the house (especially on carpet). I complained about her not being very mobile before, but this is just ridiculous. How many hands does a mom need? Right now I think 6 would do just fine.......

Our first trip outside, and around the block, after we got home from the hospital.

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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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4 mth Photo

201 Days in the NICUHolly D Gray3 Comments

Caleigh on her 4 month birthday

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