Monday, November 13, 2017

15 Week Update

This week has been... just wow! We have stuck with bolus feeds during the day and the pump at night (and when going out). The spit ups continued so we decided to switch formulas. Savannah is now taking Enfamil Nutramigen. The price tag sucks but we are trying it for 7 days to see how she does. The good news is, she is taking it from a bottle (step 1 accomplished)! Now, we just have to see if her stomach can tolerate it (step 2). As I am writing this update, she just threw up again...

She had her first doctor's appointment for being sick this week. It was so sad to see. She had a fever and we went in. She had been very congested and it was taking a toll on her. They tested her for RSV and the Flu and both were negative. So all we can do is put some saline drops in her nose and try to help with her congestion.  

Sick baby :(

She has been taking less and less from the bottle this week. We think it is due to the congestion though. She is continuing to get her OT, PT, and Speech therapies weekly. I am seeing a lot of improvement with her OT and PT. 

We have noticed some skin discoloration and don't know what it is. It might be vitiligo. We are going to bring it up to her doctor next week. It's on her arm and leg.

Here are some pictures from this week:

So close to rolling over!

Continuing bolus feeding.

Loves to sit up.

- Kate

Friday, November 10, 2017

G-Tube Pump Feeding with the EnterLife Infinity pump

We brought Savannah home at 6 weeks old with a g-tube. We got a quick (literally 2 minute) tutorial from the medical supply company on how to use the pump and we were on our way. I felt ok with it but I was just so ready to have my baby home, I wasn't asking any questions or taking any notes.

We have the EnterLife Infinity Pump. We haven't had any issues with the pump. We got a little backpack with it as well.

- Priming with this pump is so simple! It literally takes 15 seconds to prime the food through and 30 seconds to clean and prime with water. I can make a video on how to set it up if anyone needs help priming without using the pump.
- The EnterLife Infinity pump is so lightweight. The little backpack is perfect for out and about. When we are in the car, the backpack hangs on the clothing hanger in the car (with a mommy hook). When we are out and about, we just hook it to the handle of the stroller (with a mommy hook). It is nice that it is so tiny that if Savannah still needs it when she is older, she can wear it on her back without an issue.

Cons/ Things to get used to:
-The only complaint I have is that if I put in 4 ounces of food, the pump doesn't get her all 4 ounces. It seems about 15-20ml will stay in the tubing. I can't prime it into her because it just goes too fast her stomach can't handle it. I also can't prime it into a cup because sometimes it won't come out! It just skips and nothing comes out. I have learned to adjust and add a little bit more to make sure she gets her full 4 ounces.
- One of the hardest things was figuring out how to get the feeding bag into the backpack in the most efficient way. My husband figured it out and now it is a breeze! I can make a video on how to do this as well.

It can be daunting, leaving the hospital and truly not knowing how life will be. However, it gets easier. It becomes second nature. Hang in there! You will get the hang of all of it!

If you have any other questions, or want some videos, let me know!

- Kate

Tuesday, November 7, 2017

14 Week Update

It was her first Halloween. She had multiple outfit changes (thanks reflux)! She loved her flamingo costume.

This week has been crazy! Savannah is going through Leap 3 and it has been a rough week. Josh was out of town for work and we were on our own. Her reflux got worse and she was inconsolable for most of the afternoon and evenings. I have never seen her reflux like this (projectile vomiting). She is hating having to eat for 2 hours and then sit for 30 minutes. She is at the age now that she is trying to roll over and wants more stimulation. So, I started bolus feeding with her when we are at home. I will do a post about it and explain how it is going.

She had to get updated blood work to check her calcium levels. We are continuing to stick with the Similac Advance formula, unless Endocrine says no due to her calcium levels. She is tolerating it ok by mouth and the g-tube.

She is continuing weekly PT and OT. She had her first Speech therapy session this week. I am a little iffy with them but it is early and I need to have an open mind.

She is so close to rolling over. She also loves to have something in her hands at all times. She loves her caterpillar, taggie blanket, and rings.

We also left her for the first time! We went to my friend's wedding and I was terrified to leave her for a few hours. Of course, she was fine. My dad and stepmom watched Savannah. I may have went overboard with my 5 papers of directions! It was nice to have a night out with just Josh and I though!

Here are some pictures from the week:

Sleeping with her puppy Lacey.

Sleeping again!

Tummy time!

Look at those eyelashes!


Sunday, October 29, 2017

3 months old!

Savannah was 3 months old on Thursday.

Her monthly picture was so cute! I had so many great ones to choose from. She was so happy yesterday. I will post some extra cute ones below!

She has started her OT and PT. She is doing well. We have homework to work on and she loves. The hardest part is getting in enough tummy time due to her feeding schedule. We are stuck with the Similac Advance formula and it seems to be doing better for her tummy. However, it is hit or miss if she will take it from a bottle and that is a big problem. We have stopped the Nexium for a few days. She wasn't responding well to it at all. In the end, we need her to tolerate it and take it from a bottle. She is so close to rolling over. She tries so hard and it almost there.

Extra pictures from her 3 month photoshoot! 

Pictures from the week...

- Kate

Friday, October 20, 2017

12 Week Update

Savannah was 12 weeks yesterday. It is crazy to think we have been home for 6 weeks now. Our schedule just keeps getting busier and busier.

Savannah had her OT and Speech evaluations this week. She will be getting PT and OT once a week. In addition, she will have Speech therapy two times a week. We found out that she isn't cupping the bottle very well. We know for sure she doesn't have any lip or tongue ties though (yay)! She has been taken the bottle better lately. She is taking about 1 oz with every daytime feed. We are so proud and excited for her progress.

We have finally been given the clear to try some different formulas. We will have to have her calcium level checked within a week of trying. We started Enfamil Gentlelease today. We have our fingers crossed. Ready for irony... we finally get the green light to switch formulas and she tolerated the Similic PM 60/40 for two days! GI also increased her Omeprazole to two times a day. However, on Sunday we will be switching to Nexium twice a day. We have to get her Digoxin level checked because these PPI medications (Nexium/ Omeprazole) can change her toxicity levels for the Digoxin.  We are hoping to get the formula and reflux issues under control. It just sucks I can't produce enough milk for her for the whole day.

12 weeks old!

Getting ready for bed.

She smiles so much now!

She loves sitting up!

Savannah and Penelope! 


Friday, October 13, 2017

10-11 Week Update

These past two weeks have been awesome! Savannah has made such great progress.

She was evaluated for Physical Therapy and will be getting that. She has Speech and Occupational Therapy evaluations next week. She is tracking better and trying so hard to roll over. She loves to sit up, so we got her a Sit Me Up seat. We still have to watch her while she is in it, but she loves it.

Her reflux has been doing better. She still can't stand the formula but tolerates it a little bit better when we mix it with breast milk. She has done so well with the bottle lately. Two days ago, she took 4.5 oz throughout the whole day. It is the most she has ever taken! We are so proud and are continuing to work with her.

Here are some pictures from the past 2 weeks!

She is obsessed with her Wubbanub caterpillar. 

Savannah and her daddy!

Josh's favorite pacifier. 

Smiley baby!

She has dimples (at least 1) like her mommy!

Savannah's cousin Blake died 5 years ago at 44 days old. She will never get to meet him but this quote has never had such great meaning as it did on the anniversary of his death. 


Thursday, October 12, 2017

8-9 Week Update and Evaluation

I am enjoying having my baby girl at home. We have adjusted pretty well. We still have appointments 1-3 times a week. Her heart is looking great and the g-tube itself is good. We are still having issues with Endocrine and GI. Her calcium level was still elevated so we are going back for more blood work. We need to switch her formula but can't until all the blood work related to her calcium comes back. As for GI, we added Omeprazole to her medications. This can affect her heart medication, but cardio is ok with one dose in the morning for now. She is also getting Zantac 2 times a day. Her reflux is so hit or miss. There is no rhyme or reasons as to why she throws up. The only constant is the formula. She will always spit up with the formula. GI said it can take up to 4 weeks to see if the Omeprazole is going to work. We will re-evaluate at that point.

She is taking on average 1.5 oz from the bottle day. The remainder goes through the tube. We have been trying out a bunch of different bottles to see what she likes. Right now, it is a crap chute. One day she likes one and the next day she hates it. We will keep working with her. She is still getting continuous feeds throughout the night. So she sleeps all through because she isn't hungry. 

In Florida, there is a program for kids from ages 0-3 for interventions. Due to her HIE diagnosis, she automatically qualified. We went for her to be observed and evaluated. It was very difficult for me and I broke down when they started going over her results. 

They observed her in 5 categories:
1. Using Hands and Body
2. Eating, Dressing, and Toileting  
3. Expressing and Responding to Feelings and Interacting with Others
4. Playing, Thinking, and Exploring 
5. Understanding and Communicating 

Some of these categories seem ridiculous for a newborn but it's their process. 
Her highest score was in Expressing and Responding to Feelings and Interacting with Others. She is bringing her hands to mouth, starting to smile, loves to be held, etc.
Her lowest score was Using Hands and Body. This is basically fine and gross motor skills. She is going to receive Occupational Therapy because of her low scores. She was already getting OT in the hospital but it is hard to hear your child is behind.

Savannah Grace

We went on a walk and she made a new friend lol. 

A little photoshoot!