Brooke Makenzie McLarty's journey from the NICU to our home.

Wednesday, November 30, 2011

G-tube and Laparoscopic Nissen Fundoplication

On Monday, November 28, Brooke had her surgery for the G-tube and laparoscopic nissen fundoplication. We decided to get the fundoplication to help minimize any reflux she may have. We didn't realize that all this time she was experiencing some reflux but thankfully it wasn't anything that made her miserable or required any medication. Part of her stomach is wrapped around the lower part of her esophagus.

We arrived at the hospital around 11 am and got checked in. We waited in a pre-op room and during that time, we saw the surgeon, pain management team and anesthesiologist. Around 2 they took her back to prep for surgery which actually started at 3. I think it was close to 5 when we were told that she was out and beginning to wake up. An hour later we were able to see her.

The first night was horrible. She cried continuously and nothing seemed to soothe her. Anytime she moved her lower body, she cried. The next morning I told the pain management team that the painkillers weren't working for her. They set her up with something else and that started to work wonderfully. After the first day, she started to cry less and was calmer.

Tuesday evening they started Pedialyte through her pump and she did very well with it overnight. Wednesday morning she was started on her formula. We decided to go with four bolous feedings and ten hours of continuous feeding at night. If everything goes well tonight, she may get to go home tomorrow (Thursday, December 1).

I've been spending my time knitting, crocheting and reading. I don't leave her room unless it's for food. It's been nice having this quiet and bonding time but it will be nice to be home soon.

Melissa

Friday, November 18, 2011

Change of Plans

On Wednesday, we went down to Children's for Brooke's neurology appointment. It was just a followup and went well. The doctor ordered blood work which was done the next day. She also ordered a video EEG which we'll do at a later date. I don't remember seeing pictures of Brooke's CT scan and MRI when she had them done during her NICU stay. It was kind of neat to see them.

On Thursday, Brooke had her cookie swallow test and feeding evaluation. She was not a happy camper on the way down. She's used to eating and drinking at certain times so it was a very hard day for her. She ended up failing the test because she aspirated everything that was given to her. It became obvious that she would definitely need the G-tube. She was admitted that afternoon. She was given an NG tube which went through her nose and into her stomach because she needed to have her medicine. There wasn't an IV form of her medicine so that's why she needed the tube. She had a miserable evening and just kept on crying. She was hungry, tired and not used to the NG tube. We did not sleep well that night.

On Friday, she had an upper GI done. The results came back normal and she has no signs of reflux. About thirty minutes after we got back to her room, she went down to get an NJ tube. It's a tube that goes in the nose but ends in the intestines. It can stay in longer and we don't have to worry too much about it coming out. She did very well during that procedure and I don't think she needed to be sedated. We came back to her room and relaxed for a little. We both ended up taking small catnaps. I had a visit from one of my high school classmates.

Around 5 pm she finally got her first tube feeding. She was still fussy but it eventually kicked in. We had a visit from Mark and Sydney which was nice since I hadn't seen Sydney for two days. She said that I lived in the hospital now.

At 930 pm, Brooke finally fell asleep. After 10-15 minutes, I decided to go take a shower. I also took the opportunity to grab a snack from the cafeteria. When her feeding pump started to beep, it woke her up. She fell back to sleep quickly and has been asleep since. Tonight is much better than last night and hopefully she sleeps well. She definitely needs it.

We're supposed to be discharged on Saturday. I will update this entry or will write a new one Saturday evening. By then we should know when her surgery is scheduled.

Melissa

Monday, November 14, 2011

Bond, Dr. Bond

After having a meeting with the nurse at Brooke's school, we decided to consider the idea of getting Brooke a G-tube. It's also referred to as a Mickey button. Whenever Brooke gets a stuffy nose and/or sick, she doesn't like to drink her bottles or eat off of a spoon. She has had problems gaining and keeping weight on since she turned one year old.

We met with a pediatric surgeon and so far he's on board. We still need to consult with several other specialists before making a final decision. Hopefully if we do deicde to go through with it, we get it done before Christmas. That way we have someone to watch Sydney because I will want to be with Brooke as much as possible.

Dr. Bond mentioned that Brooke will need to have an upper GI done so that we can see if she has any reflux problems. I know I'm missing other pieces of information so whenever I remember them, I'll add them.

By the way, his middle name is James. :-D

Melissa

Brooke's Cloth Diaper Adventure

Around this time last year I started to research everything I could about cloth diapers. It had become obvious that Brooke would be in diapers for life. I ended finding a family owned store in Pittsburgh and made my first purchase from them in February 2011. www.happybabycompany.com

Brooke started out using prefolds and old fashioned cloth diapers wrapped around microfiber inserts with waterproof Bummis covers. Then I started looking at different websites and found BumGenius diapers for a great price from www.cottonbabies.com. They were called all-in-ones were basically just like disposables. I ended up getting all of the colors.

Through CafeMom I found a woman who was having a buy one, get one half sale so I ordered some custom diapers from her. For awhile, these all seemed to work but occasionally we had some leaking problems. I had found a bunch of cloth diaper pages on facebook so I searched through this pages until I found someone who had very reasonable prices. Chunky Monkey Products was the winner and she was great to work with. I got a dozen custom diapers, two wet bags and a few mama cloth pads for myself. These have been th best diapers made by a work at home mom.

I also have purchased other brands such as Goodmama, PLUMP, Sunbaby and Alva Baby. Right now Brooke wears the cloth diapers when she's home. I'm working on finding enough to send to school so that she wears them there as well.

I definitely wish I had started using cloth diapers on Sydney. It's the best addiction I've ever had!

Alva

Bummis covers....the big multi colored circles is a swim diaper...had 5 solid colored covers but gave them to someone who wanted to try cloth diapers on her son and plus the covers were too tight for Brooke)

Everything in the cart

Chunky Monkey Products AI2 diapers....waterproof shell with removable inserts
 
 

Top to bottom, left to right: BumGenius (gave all 7 to a child who needed them more than Brooke, Coolababy, Cooshie Tooshies and Crazy Critters

Top to bottom, left to right: Drybees, WAHM, Nattie's Nappies and Rainforest Babies

Top to bottom, left to right: Sunbaby (have 4), WAHM and Tooter Bugs

Top to bottom, left to right: Fuzzibunz microfiber inserts, Kissaluvs booster doublers, Child of Mine padded cloth diapers and Child of Mine regular cloth diapers (gave half of my Child of Mine stash to someone who wanted to try cloth diapers on her son)

Fleece soakers....wear over fitted diapers which don't have a waterproof lining or cover

Goodmama fitted diapers....got them all pre-owned....at least $145 worth of diapers for approximately $50

J&J dipes....sold them all but I love the fabrics
 

PLUMP Diapers

Cloth Diaper Detergent

Wetbags...waterproof on the inside...Bummis on the left and the other two are Chunky Monkey Products

Top to bottom, left to right: Booty Butter (have a regular size and a sample size), Osocozy flannel wipes, CJ's BUTTer (have 4 sample sizes) and honey chunks to make a cleaning solution



Melissa