Wednesday, April 6, 2016

Dusting Off the Old Blog

Nothing like an extended blog vacation...but spring is here and it is time to dust this thing off and get back to blogging! I'll do a brief catch up and then bombard you with pictures :)

The last time I blogged we were closing in on our 1 year Failure to Thrive diagnoses, we've passed that as well as our g tube/nissen surgery anniversary, & are coming up on our gj tube anniversary.  Claiborne had a 5 day hospital stay right before Christmas with RSV, while it wasn't fun we had lots of visitors to the Peds floor that week and got home right before Christmas. We had a very quiet Christmas at home because we did not want to expose C to any germs. Poor Hudson had his first ear infection, a double at that, just 2 hours after we were discharged! I felt so bad for him, apparently his ear had been hurting for a few days but I had been at the hospital and he was shuffled between grandparents so we just didn't realize!

Thankfully everyone has been pretty healthy since then! C, my mom, & I went up to Children's Hospital of Philadelphia at the beginning of February for a GI Motility consult. It was absolutely amazing! We tried to stay at the Ronald McDonald House but they were full. Claiborne's 1st appointment was at 7:30am so we caught the 7AM shuttle from the hotel to the hospital. While walking around to the radiology suite my mom and I both commented on how quiet and peaceful it was, totally different than VCU. For her 1st procedure they put radiation in her honey thick formula and had her drink it, they then strapped her down and we watched her stomach and esophagus for about 45 minutes.  She was such a trooper and held my mom's hand the whole time! Afterwards we had some time so we had a quick breakfast in the cafeteria and then headed up to GI.  We met with the NP first and then the DR, from her test in the morning they determined that she is re-fluxing past her Nissen Fundoplication, which if you remember she had surgery for last Feb. to make it impossible for her to reflux, and that her stomach is extremely slow emptying, this is called gastroparesis. So we added a new medicine and scheduled a follow up which happens to be on MONDAY. I am interested to see if they think that the medicine is helping or if we change things up again.

Hudson has been super busy playing soccer and basketball during the fall and winter. I cannot believe that he turned 7 and became a little man overnight. He is ready for summer break and we are all ready for river season.

Tuesday, November 10, 2015

Almost a Year...

Well it's November and that means we are quickly approaching Claiborne's first anniversary with FTT (failure to thrive). November 5th of 2014 is a day that will be burned in my mind forever, it's the day of C's first hospitalization.  It marks the beginning of her journey.

While that first 4 days in the hospital seems so long ago I remember it like it was yesterday. Claiborne hadn't been able to keep anything down all day, I had gotten her into the Dr's office just before it closed and it was decided that we should give her pedialyte at her bedtime bottle. Poor girl couldn't even keep that down so they sent us to the ER.

I remember thinking how hard it was when they decided to only give her IV fluids, how she screamed because she was hungry, the guilt of pumping while sitting next to her.  Today I would give anything for Claiborne to cry out in hunger, to be able to tell me that she is hungry or full.

Things are different today than they were a year ago, and honestly I believe that I have a happier child today than I did last year. Claiborne is growing and crawling and above all happy. While I would give anything to take away all that she has gone through I am so glad that she is gotten to a point where when people ask me how she is doing I can say "great!" and it not be fake.

Claiborne weighed 10lbs 5oz (at the time of admission) at almost 4 months old, she lost 10% of her body weight while in the hospital that first time. Today she weighs 18lbs 8ozs at 15 1/2 months! She has gained 8 pounds this year!

Every doctor we see is just so impressed with our girl and how amazing she is! I am so grateful for how happy she is, I think that makes everything better :) She just learned how to crawl and is working hard in Speech, PT, and Feeding Clinic! We are anxiously waiting to hear if she'll say mama or dada first! She still gets her feeds through her GJ tube but is eating 3 small meals a day which she loves.

1st Hospital stay November 4th 2014

practicing standing during PT

practicing drinking her extra extra thick formula

Then v Now ( 3 1/2 months v 15 1/2 months)

Wednesday, September 23, 2015

Claiborne Update & Some Prayers

So it has been awhile since I've given y'all an update on Miss Claiborne! We had a great summer, only 1 ER visit back in July, I count that as a win! C has been so happy this summer, she is gaining weight and doing her best to try and eat us out of house and home!

Also in July she had her third MBS (modified Barium Swallow) done. As usually Claiborne knew she was being "watched" and did not do any of the things we normally see from her when she eats! The little stinker ever stopped aspirating as she fatigued which shouldn't have happened...we were able to figure out that because of the way she was sitting she was bending her neck down to protect her airway. While smart on her part it left us without a great picture so to speak of what is happening when she eats or drinks.  We did see that she is backing up food in her esophagus when she eats solids. After watching her study her GI called and said the next move would be to look into motility problems, something he does not do.

 So after her Dr's message I must admit that I did not call him back right away...I mean she was doing so well and I honestly wasn't ready to add another specialist into the mix.

Spring forward to last week...Monday I finally took C in to see her GI DR to not only have a follow up but also talk about motility. First of all he thought C looked fantastic in regards to her weight! Now onto the discussion I had been hesitant to have...a new pediatric motility gi DR had recently come to Richmond but not only had I heard negative things but C's DR said he wouldn't refer us to him because all of the patients he had already referred had called back angry and upset. So I thought oh ok we will go to UVA, nope, the closest place that has the specialist that she needs is Children's Hospital of Philadelphia. That was a shock! He told me to go home, do my research on the DRs and that he would make the referral when we were ready.

Tuesday we had Feeding Clinic, which is probably Claiborne's favorite day of the week. Her therapist let her try drinking thickened formula from a straw...she immediately started choking and we could hear a clunking sound as the liquid moved down to her stomach. Now, I have heard this sound before, anytime she would get water in her mouth either form the tub or pool it would make this sound. We immediately stopped, I think her therapist was trying not to scare me because she remained pretty calm and said she would talk to the head NP the next day.

Wednesday night I got a voicemail from the NP saying they had gotten me into the DR here at VCU, Mack and I decided to talk with her GI in the morning before making a decision. The NP called again Thursday morning at 6:30, now I was kind of freaked out, I mean were they that concerned with what had happened Tuesday that they had pulled all these strings to get C in? We talked with her DR and he said we should at least speak with the DR and that we can always get a second opinion. So we have that appointment next week.

Thursday night I pulled C out of the bath and noticed she had an abscess right by her tube, I quickly sent pictures to her nurses who said we should go to the ER. I also talked to the GI on call and we decided to try warm compresses and go see him 1st thing in the morning. She once again has a staph infection so she is back on Cipro...ugh poor girl can not catch a break.

That brings us to tomorrow, tomorrow Claiborne will have her GJ tube changed out for a new one. This should have been done back in June or July but we were all hoping that we would be putting in a G tube which is not happening. We also ran into trouble when trying to order a new GJ tube through the home health companies and ended up having to order it directly to the hospital.  This procedure is done by Interventional Radiology and she will have to be under anesthesia which will buy us at least 1 night in the hospital. 

So please send us some good vibes that Claiborne's procedure goes well and also that her appointment next week goes well also.

Thursday, July 30, 2015

Happy Birthday Claiborne!

Well it happened...she turned 1! I was such a mix of emotions on her birthday. We had a great little party at the River with our family! The theme of course was crabs and while C did not partake in any the adults enjoyed themselves. While I am sad that year one went so fast I am excited and hopeful for this next year in Claiborne's life!

Our little family of four

Crabs anyone?

the cakes...aren't these amazing! so good too!

cousins :)

trying out the cake

Perfect ending to a perfect day

12 month stats:
weight: 16lbs 3oz
length: 26 3/4 inches
loves puffs, can eat baby food for 8 minutes a day, wearing a size 3 diaper, & 6-9 month clothes

Monday, July 13, 2015

Lazy Days of Summer...

Whoever came up with the term lazy days of summer obviously did not have kids! We have been anything but lazy over here in the Lindsey house! Claiborne has been enjoying the pool, she loves to splash and watch the big kids. We've been going to the river when we can and are so lucky that we have a community pool that Claiborne can swim in.

Hudson finished Kindergarten in the middle of June and has been busy with swim lessons, lacrosse camp, VBS, and tennis camp....I cannot keep up with him! He is loving being home with us and has been a great help with sissy.

In the beginning of June Claiborne was once again in the hospital but this time it was a short trip for some fluids thank goodness. When C gets sick her body has to burn calories in order to fight off infection which is in her case causes severe dehydration because she cannot afford to spare any extra calories.

On a happy note our sweet girl was Baptized on June 21st. She is very blessed to have 3 incredible Godparents looking out for her.

Hanging out at the pool

Cousin time with Emma

Hudson and Mack went fishing over Fourth of July weekend with friends!

Best big brother award goes to Hudson!

Last day of school!

Claiborne has been doing a great job in PT, this was our last day with Andrea because VCU Children's pulled all of their services from early intervention. Don't get me started on that...

St Christopher's Lacrosse Camp!

Claiborne and her Godparents, Lauren and Chris Darden and Ti Hensby

Take note...all 4 looking at the camera!

It is so fantastic to have Ti as one of Claiborne's Godmothers. She and I are Godsisters ( my parents are her Godparents and vice versa) so the fact that she will always be there for Claiborne is extremely special for me.

Hudson loved VBS, C loved the nursery, and I forgot how tiring 8 three & four year olds are!

Hudson lost tooth number 3!

Fourth of July at the River! Hudson, Mack, and I went to Urbanna to watch the fireworks

Hanging out on Mr Mike's boat

This girl is just the most adorable thing

Although she can't get in the water she did get to visit the beach!

Lastly, I snuck into her room the other day and it hit me that babies don't keep. We are in the final countdown to her 1st birthday on Saturday and I am just not ready. I stopped aging her back in November when all of this started so I cannot comprehend the fact that she is turning 1.

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