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

Friday, December 30, 2011

Goodbye 2011, Hello 2012

It's hard to believe that 2011 is almost over. We've had a rough one. We spent a majority of the last year fighting over Brooke's health. Even though she hasn't gained much weight since her first birthday, some people thought she was being neglected. After several months of investigation, they were finally satisfied that everything was being done in trying to get her to gain and keep on weight.

In the spring, we started thinking about if we wanted to send Brooke to the Intermediate Unit preschool or the Easter Seals preschool. We applied to both places and ultimately decided that Easter Seals was the best place for her. Over the summer she had several evaluations and we visited the school. She started at the end Of August and has been doing very well. She has excellent teachers and therapists.

Sydney attended her first year of preschool last year and loved it. Now she's in her second year and is doing very well. She has several "best friends" in her class. She is starting to practice her writing skills. She doesn't like to write unless it's her own decision so I've stopped asking her to write things out. She is very protective over Brooke now that she has her g-tube. She has had quite a growth spurt this past year. Pretty soon she's going to be as tall as me.

When it comes to our health, once again we've had a good year. The girls have had their share of colds but that's it. We did have a very small case of croup in the fall but that was basically like having colds. Mark and I probably got more sick than the girls. That surprises me since they're both in preschool this year. They must have killer immune systems. I do feel a bit smug anytime I hear about my friends' kids coming down with horrible illnesses. I know it's only time before we experience it. We have been very blessed to have such two incredibly healthy daughters.

Mark and I got engaged this past spring. Here is a reader's digest version. Mark's parents were going to babysit the girls while we spent the night in Pittsburgh. It didn't occur to me that Mark having the weekend off was odd. We stayed at the Renaissance Hotel and had dinner at The Capital Grille. He proposed after dessert! So far, no big plans yet.

Some of my cousins went through some big life events. Two welcomed daughters in January. For Scott, she was his second and for Jaime, she was here first. Matthew got engaged on the spring. Kadie got married in June. Jennifer got engaged this fall and today, Dec. 30, she's getting married.

Mark's brother, David, got married in July so he and Sydney got to go to the wedding. The best man (I think) was unable to be there so Mark filled in for him. Sydney was a flower girl.

I can't think of anything else that I want to share about 2011. I hope everyone has a great 2012!

Melissa :)

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

Thursday, August 4, 2011

The beginning...

I met Mark in April of 2005. A few weeks later we started dating. Shortly after celebrating two years together, our first daughter was born. Sydney Mikayla made her grand entrance on May 24, 2007, at 6:45 am. She was the perfect first baby. Now at 4 years old, she's a sassy little drama queen. She loves everything from princesses to snakes. She is the perfect combination of girly girl and tomboy. Mark is able to enjoy playing cars and outdoor sports with her while I enjoy the dress up and girly stuff. She will be attending her second year of preschool at the First Presbyterian Church.

Brooke Makenzie arrived 14.5 months after the birth of Sydney. I had very easy pregnancies and loved being one of the few who didn't have to spend quality time with the porcelain bowl. The labor and delivery of Brooke is where everything was different. The thought that she wouldn't make never crossed my mind. I just wanted to get through the days as they each passed. She received excellent care while she was at Children's Hospital of Pittsburgh and the Children's Home of Pittsburgh. She was born on August 12, 2008, and came home with us on October 1, 2008.

After being home for a couple weeks, she started physical and occupational therapies through Early Intervention. They each came to the house once a week. In January 2010, she started speech therapy. The therapist worked with her on feeding on a weekly basis. Due to weight concerns, we added a dietitian in the fall of 2010. She came to the house twice a month, weighed Brooke and helped make suggestions.

Brooke has a milk protein allergy and has had it since birth. Whenever she comes into contact with a milk product, she gets a rash and has trouble breathing. Thankfully her reactions aren't too serious but we did take her to the ER in June 2010. Sydney is very good about not sharing her food. It's been very hard finding nutritious food that doesn't contain milk but will help her gain weight. We had some problems with people thinking we were neglecting her but they've realized that there isn't too much that can be done. We can't give her too much food in one sitting because she will end up getting sick. She drinks soy formula and soy milk. She's currently on stage 3 baby foods.

At the end of the month, Brooke will be attending the Easter Seals school. Transportation will be provided so we don't have to worry about taking her and bringing her home, especially in the winter. Her class will be set up like a preschool and they'll do things like circle time. She'll get a snack and I'll have to pack a lunch for her. She will also receive therapy at school. I'm actually very excited that she's going to school because I never thought she would be able to go school.

I'm going to save her cloth diaper adventure for another post. Now I need to go make a late lunch for my girls.

Melissa