Sunday, February 25, 2018

26-30 Week Update

Reflux/ GI Doctor Issues:
We have seen the same GI doctor since the NICU and since then they keep saying Savannah needs a GJ tube instead of a G-tube. We have never agreed with this and have fought against it. We finally had enough. We went and got a second opinion from another children's hospital. They were completely against a GJ tube. She is gaining weight (about a pound a month). When I went over all the formula and medication changes, they were shocked. They couldn't believe that we changed so much and GI would say give it a day or two to see a difference. I really liked this new doctor. We met with the nurse, GI doctor, and GI Chief. They listened, took notes, and then we all agreed on the next plan of action. They do think delayed gastric emptying could be the issue but they want to do some other tests first. 
Savannah will be having another Upper GI (had one in the NICU) and a G-tube study (to rule out pyloric stenosis). If these tests come back ok, we will look at changing her formula or a stomach emptying scan. It is nice to have reasons behind changes. We took charge of Savannah's care and frankly, we should have done it sooner. We feel comfortable with this plan of action and with these doctors. 

We went to the NF Clinic in Orlando. We met with a team of about 12. They checked her over and the only criteria she has right now are the cafe-au-lait spots. The head doctor counted 6 that meet the size requirements. We were told they would see us in a year and that was it. We have the choice of doing genetic testing but it isn't 100% so they don't recommend it unless insurance will cover it. We are deciding what to do now. I also found an amazing NF group on facebook who recommended getting a second opinion from the new NF Clinic at Arnold Palmer. I will be calling them next week to see about that. 

PT/ OT/ Speech:
We are continuing with weekly PT, OT, and Speech. PT is very happy with Savannah's progress. She sits up on her own and reaches with both hands. She still favors her right so we are working on that. OT is happy as well. She is still wearing her splints at night. Speech has been a whirlwind due to her reflux issues. We brought in more purees and now she is gagging and throwing up. Speech says it is a sensory issues so we have started to work on that. We started with a different Speech Therapist last week. We will see how she progresses with the purees and bottle.

Here are some pictures and highlights from the past few weeks:

- Kate

Thursday, February 8, 2018

Feeding Tube Awareness Week!

It is Feeding Tube Awareness Week!

I never knew much about g-tubes until Savannah had spent 5 weeks in the NICU and we were begging for one. Her g-tube allowed her to finally come home after 6 long weeks in the NICU. She was able to learn how to suck on a bottle at her own pace. She now takes 70% by mouth and 30% via her g-tube. Without the g-tube, we would still be in the NICU. She wouldn't have been able to leave until she was at 100% by mouth. She improves every day! While sometimes it can be a hassle and make things way harder than it needs to be, it brought our baby home and allowed her to gain weight while safely learning how to take a bottle.

You can buy Savannah's mermaid outfit HERE

- Kate

* Post contains affiliate links. I am not sponsored by any brand mentioned above. All opinions are my own.

Monday, February 5, 2018

Post NICU Life Must Haves (HIE & G-Tube Baby)

Savannah came home from the NICU at 42 days old. She came home on medication for her heart and reflux. She also had a g-tube. We learned quickly that things we had bought before just weren't going to work anymore. We learned a lot and spent a lot of money on things that I wish we had just bought from the beginning. All of these things work great for any baby, not just medially fragile babies. However, these are the must haves for us when we came home.

1. Fisher Price Auto Rock 'n Play Sleeper - This was a life saver. When Savannah came home, she was on continuous feeds with her pump. This was so comfy for her to sleep in. It rocked and played music automatically (with different settings). It also let us tuck her tubing on the side and she wasn't able to mess with it. It was what she took all her naps in. It also has an incline and helped with her reflux.

2. Boppy Lounger - This is a must have for feeding. Once we started doing bolus feeds, this was perfect. She was comfy and could still move around a little bit. It also worked for the pump feeds as well!

3. 4Moms Bath Tub - Bath time was a scary experience when we got home. We weren't comfortable with her g-tube and were scared of messing with it. We were not going to keep bathing her like we did in the NICU, so we got this. It constantly flushes in new and clean water. She isn't sitting in dirty water. It also lets us know the correct temperature at all times. She loves being able to have her feet up and loves bath time with this tub (unlike at the NICU).

4. The First Years Nail Clipper with Magnifier and Zoli Buzz B Electric Nail Trimmer  - Want to talk about the scariest thing to do to a baby... cutting their nails! It was terrifying. We were in the NICU so long that we had time to find the best stuff and these two products are it. I love the nail clipper with the magnifier. It allows me to see everything up close so I don't make any mistakes on her sensitive skin. The Zoli is kind of like a dog nail trimmer! We use this every other day to keep her nails nice and dull.

5. Snap Up Rompers - These are a must have with a g-tube! We taped her g-tube so it came out of the side. We could easily open up one snap and remove the extender if needed. It made diapers changes easy to! My favorite brand is Carters.

6. Button Up Pjs - These go hand and hand with the rompers. We taped her g-tube and had this come out the center of the pjs for nighttime feeds. It was comfortable for her and made accessing the g-tube for nighttime medications easy! It sucks that we bought so many zipper pjs. They just weren't the best for us to use with her g-tube.

7. Dr. Brown's Bottles with Preemie Nipples - Savannah didn't have a good suck which is why she got the g-tube. We tried every single bottle I could find (just check my amazon orders lol). In the end, Dr. Brown's worked the best for us. We used the 4 oz with a preemie nipple while she worked with Speech on her suck. It was the only bottle I found with a preemie nipple that didn't flow too quickly.  It was just the right rate.

8. Boon Lawn Drying Rack - We had so many bottles, nipples, syringes, tubes, etc. We need something that could hold up the syringes to dry and have enough room for all the bottle parts. This drying lawn was perfect. It looks so cute on the counter too and doesn't take up much space!

9. Infant Optics DXR-8 Baby Monitor - I was terrified to leave her alone. We went from having her on monitors 24/7 to nothing. We got this monitor and it is awesome. The picture is so clear and it even has lenses you can change out. It has a huge screen and great battery life.

10. Owlet - With Savannah's heart condition, once again, monitoring was a must. We settled on the Owlet. I love being able to use my phone to check her stats. We have to know her heart rate before giving her her heart medication and this is so much easier than checking it by hand. I will say, I had some issues with the Owlet. We had to get a new sensor by 6 months. I found their customer service on the app to be very good but their customer service related to the Connected Care app needs improvement.

- Kate

* Post contains affiliate links. I am not sponsored by any brand mentioned above. All opinions are my own.

Friday, February 2, 2018

6 months old!

Savannah turned 6 months old! 

She is doing so well. We are trying not to focus on the Neurofibromatosis diagnosis until we know for sure. We get genetic testing later this month.

Savannah is sitting up on her own for 5-10 minutes. She loves to sit up and look all around. She turns herself in circles all around the floor.

She weighs 15 pounds!

She smiles all the time!

We had major issues with her g-tube and Alimentum so we went back to Nutramigen and cut back on using the tube. She is now taking 18-20 oz a day by mouth! She showed us she can do it. It is such a great accomplishment.

About once a week we do some sensory play and eating with purees. She enjoys it! We love our 4Moms Highchair. It is so easy to clean up these major messes!!

She still loves her caterpillar and new toys like her rattle, guitar, and monster and water books.

This Binxy Baby Shopping Cart Hammock makes shopping so much easier. I have room for all the groceries and she is happy, comfy, and most of all - safe!

*Fisher Price Sit Me Up is great. It supports her so well. She has been using it since 4 months to help with sitting. 

- Kate

*Post contains affiliate links. I am not sponsored by any brand mentioned above. All opinions are my own.

21-25 Week Update

After that last post, it is time for some happier news. Here are some of the snapshots of Savannah's life (weeks 21-25).

She turned 5 months old and found her feet! She is obsessed!

She celebrated her first Christmas and went on her first (long) road trip! She got to experience some real cold (unlike Florida)!

She is doing great in PT and OT.  PT thinks she will be crawling any day now and walking by 10 months. She loves to be on her tummy and just move on all over the place. She has started to scoot backwards.

The bottle is still a struggle. We switched formula again due to reflux and weight gain. She is now on Alimentum. She prefers the taste over Nutramigen because she drank 8 ounces in one day! That is her new record! It doesn't seem to do much for the reflux though. We will see how it goes.

Her heart condition Supraventricular Tachycardia (SVT) is going well. She has her monthly Holter monitors and everything looks good. Her cardiologist wants to have her stop taking Digoxin at the next appointment and see how she does.

We have started a few purees. We are just doing a few spoonfuls everyday. She really likes carrots and pumpkin! Green beans were a complete fail!

We got her an OtterRoo. She loves it! She loves being in the water and flipping all over the place!

Bath time is still one of her favorite things. We love the 4Moms Bath Tub. It is comfy for her and it only uses clean water!

She loves waking up ... she is so happy!

- Kate

*Post contains affiliate links. I am not sponsored by any brand mentioned above. All opinions are my own.

Friday, January 12, 2018

When it rains, it pours... (new diagnosis - Neurofibromatosis)

I posted before about some discoloration Savannah had on her leg and arm. It started to spread and she was getting more dark colored spots on her body. They ranged in size from a piece of sand to a dime. Our pediatrician originally thought it was Vitiligo. At the time, I was devastated. My mind went everywhere... Will she be made fun of? Where it will spread to? How bad will it get? How will I help keep her confidence in such a cruel world? Will I be able to help her feel beautiful everyday?

Well, those questions didn't matter because with the darker spots coming, we knew it wasn't Vitiligo. We were referred to a Dermatologist and it was going to be months before the appointment. So, me being me, I went to Doctor Google. I researched for days on end about what she could have. I learned her spots were called cafe-au-lait spots. I learned that they can be basically just birthmarks without other indicators. However, Savannah had the other indicators.

I made the determination she had Neurofibromatosis or McCune-Albright Syndrome. I remembered thinking about how I felt about Vitiligo. I was devastated and now we were looking at major medical issues. It wasn't just a skin pigment disorder. It was something bigger. I researched both and was fairly certain it was Neurofibromatosis. Neurofibromatosis is actually fairly common. 1 in 3,000 have it. Where as, McCune-Albright Syndrome is very rare. She just seemed to have more indicators of Neurofibromatosis, so my money was on that.

I went in alone to the appointment. I was prepared and had my questions ready, but I didn't need them. The Dermatologist and I were on the same page. It was Neurofibromatosis. She had over 10 cafe-au-lait spots in varying sizes. 4 of the spots were larger than 5mm. She has a heart condition, which can be part of Neurofibromatosis as well. She was going to refer us to a Geneticist because she can't be 100% sure if it is Neurofibromatosis at her age.  You don't see the other symptoms until ages 5-8. The genetic testing would tell us if she had it or not.

I didn't cry in the appointment. I was relieved to know what it was. Then, I reached the car. All the thoughts and emotion flooded my head. Did she have NF 1 or NF 2? NF 1 is mild compared to NF 2 and NF 2 is so scary. How am I going to explain to her what she has? How do I explain to the world what she has? Will everyone judge her without getting to know her? Will she be in pain? Will her SVT or HIE make the Neurofibromatosis worse? How will she handle all of this? How will I be strong enough to handle this and be there for her? What did I do in life to make my child have to go through all this pain?

I cried. I cried in that parking lot for an hour. I thought we had dodged a bullet with her HIE. She has been excelling in PT and OT. She is getting better with the bottle. She is the happiest baby ever. And then the rain came... and it just kept pouring.

The Geneticist has a 6-8 month wait. Luckily, Orlando has one of the best Neurofibromatosis clinics in the nation. They will be able to see her in February. She will get a complete work over and we will see what we are dealing with. Is it NF 1 or NF 2? It is still a waiting game though. We won't know until she gets older what she will have from the Neurofibromatosis. Will she have tumors? Will she lose her eyesight? Will she have scoliosis? We will have no idea. The worst part hits during the teen years to early adulthood. The not knowing is horrible... just like with HIE.

Once again, the questions just flood my mind. The what-ifs are killer. However, today though, I am at peace. I watch her on the floor playing and trying to crawl. I hear her laughing and see her smiling. I don't know what the future holds for her medically. However, I know what the future holds for her in our family. She will always be loved. She will always have her mom and dad to try and make her laugh. We will always hug her say "I love you." We will fight over who gets to call her love bug. We will fight for her and her needs. We will do whatever it takes to let her know she is beautiful and the most important person in our lives. Most importantly, that she is loved... more than she will ever know.

- Kate

Tuesday, December 19, 2017

19-20 Week Update

Savannah had been doing really well with spit ups. However, GI wasn't happy with her weight. They had us up the concentration (extra scoops) of formula but keep giving her 28 oz to help gain weight. We tried this for a week and it was awful! She went from spitting up 1-3 times a day to 6-8. We went back to just normal concentration. I ended up buying a scale to weigh her at home. It helps me feel better about her weight and being able to watch it myself. We are giving about 29-30 oz in a day now to help with the weight gain. It is slow but better than it has been so far. Her spit ups are back to where there were before, 1-3 a day.

As far as the bottle goes, we are still trying with every feed. She is still taking about the same. Some days it is more and some days it just sucks. It is what it is and we are just continuing to work at it with her. She is still continuing to go to Speech once a week.

OT and PT are going really well. She is a rolling machine and loves to sleep on her stomach. We are working on moving her legs now when she is doing tummy time. She is moving her right leg a lot (like beginning stages of crawling) but her left isn't doing as much. So we are working on both. She still wears her splints at night and 6 hours during the day due to fisting. She is grabbing a lot but fists when resting or just hanging out.

OT wanted some sensory play with food. We talked to GI and they were ok with it. We haven't done it yet but will soon. We did just let her try some purees. She did ok the first time but gagged and threw up the second. We were only giving 1 spoonful but she just doesn't seem ready yet.

Overall, she is doing well. We are continuing with therapies and just taking everything one day at a time.

Some pictures from the past 2 weeks:

She loves this excersaucer! This Skip Hop Activity Center is awesome! It even turns into a table for when she is older. 

All dressed for our one cold day in Florida!

Loves to hold her bottle (with some help)!

Road trip to see her cousins Christmas program!


Chewing on her banana!


* Post contains affiliate links. I am not sponsored by any brand mentioned above. All opinions are my own.