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!


Savannah is 2 months old!

I love to take her monthly pictures. This one was a lot harder than 1 month. She is moving so much more! She is starting to smile and trying to roll over (hence the picture in the Dock A Tot)!

Here are some outtakes. 


Post NICU Life (g-tube, severe reflux, hypoxic ischemic encephalopathy, SVT)

Savannah has been adjusting well. We have so many appointments every week and are trying out best to keep up with them. We are still learning with the g-tube, pump, and 3 medications. She is trying a bottle and sometimes does well and sometimes she doesn't. Her reflux has gotten worse. Her GI doctor wants her back on continuous feeds but it doesn't change anything. We are going to fight for some medication other than Zantac. We want her on a PPI to help. We did get a Rock N Play that she naps in while eating. It has helped with the reflux a little bit. However, she is still projectile vomiting with every formula feed. We have to find a solution for this. She can't handle that formula but until her calcium levels are under control, we can't switch it.

Here are some pictures of her new life outside the hospital!

Heading to her GI doctor.

Loving her pacifier! 

Chilling in the Boppy Lounger while being tube fed.

She loves her crib...

but she loves this caterpillar even more!

She loves to sit up!

She loves the Rock N Play. 


Wednesday, October 11, 2017

Surviving Hurricane Irma (with a newly discharged/g-tube NICU baby)

We took our baby girl home on Thursday. She came home with a g-tube and requires a pump to feed. We knew Hurricane Irma was coming and we started to prepare early. We had lots of food, water, and gas. We were able to get a generator last minute (thanks Amazon)! We felt really prepared for the storm. It is so different having a baby during a Hurricane. It isn't just a drinking party anymore.

Hurricane Irma was a big storm. We lost power early on and the storm shifted and came right towards us. We had some damage to our roof and fence. Overall, we were very lucky.

Savannah did so well. She slept through the worst parts. The hardest thing for her was not having power for 3 days. The house got very hot but we kept her cool the best we could.

Here she is just chilling out post-Irma. 

Love this print from Lilly for Hurricane Irma.


Hypoxic Ischemic Encephalopathy (HIE) NICU Stay: Day 42 (Discharge)

Everyday for the past 42 days we have been at this hospital. I've watched countless families leaving with their babies and wondered when it would be our turn. While at the same time being thankful that we knew eventually we would be one of the lucky ones to take our baby home. Finally, that day has come. Savannah is 6 weeks old and is going home! She still has to work on feedings and will have many outpatient appointments. However, she can practice feeding at her own pace and at home thanks to a g-tube. She is leaving weighing 4850g or 10 lbs, 11 oz. She will have her first pediatrician appointment tomorrow before Hurricane Irma comes this weekend!

Her coming home outfit... even the pacifier is color coordinated (totally by accident)! 


Tuesday, October 10, 2017

Hypoxic Ischemic Encephalopathy (HIE) NICU Stay: Days 36-41 (G-tube Surgery)

Day 36- Today is the big day, g-tube surgery day. I am a complete mess and worried. I know it will go fine though. We came in at 7am and she were just passed out. She got your IV in at 2am and is NPO. She slept from then on. 

I have no idea why you have one splint and one mitten on... makes no sense.  

We have our favorite day nurse for the surgery today and I was so happy about it. Her surgery went so well and she is doing great. I like how they texted me updates during the surgery. It took about 45 minutes total. 

She took 10ml and 15ml with the nurse. She said she had a little bit of pain but nothing major. She slept most of the afternoon. Josh or I are going to bottle feed her tonight and see how she does. She sees very sleepy though so we will see how it goes. I fed her and she ate 10 in about 5 minutes. She was sucking so well. She drank 18ml total! 

Day 37She woke up as soon as I said good morning. It was so cute. Her eyes are so blue right now. Dr. Pineda is here for the weekend. We love Dr. Pineda. She is going let her bottle feed whatever she wants and then 22ml by her g-tube to try it out. She said the company should be here Tuesday to teach us how to use the equipment. We are looking at Friday at the latest to take her home! 

Cardio stopped by for a social visit. She will see him a few days after discharge. 

Josh fed her the bottle and she took 8ml. She were sleepy. She loves looking out the window. I feel like she will be an outdoor baby! She had a little spit up with the first feed through the g-tube. It was mostly mucus though. 

She doesn't have that stupid NG tube anymore! She seems to like it a lot better without it. We can truly see her whole beautiful face now.

Day 38 They upped her feeds and she is another step closer to coming home. She is still spitting up and we wonder if we made the right decision for her regarding the Nissen. I hope so.  I learned how to use the Kangaroo Pump and gave her the nightly feeding with it while Josh held her. 

I caught a smile on camera. 

Here is what her g-tube looks like.

Day 39Her head IV is gone and she passed her hearing test! We are now waiting for rounds to see the next steps. 

They upped her feeds to 91ml every three hours. She is still getting it through the pump over an hour. She spit up with the 11am feed. Speech came today and she didn't want the bottle at all. She was too sleepy.

Josh and I gave her a bath tonight!  She didn't want to eat much with Josh but he did start her feed through the kangaroo pump! She fell asleep so quickly. 

Day 40 I came in and heard her crying down the hall. She wasn't very happy but she is good now. I have no idea who her nurse is because the board isn't updated yet. I have to ask about formula and hurricane preparedness during rounds since she are coming home. It is craziness to come home right before Hurricane Irma hits but I feel better with her a home than alone at the hospital. 

I called the photographer to see if they can come do her pictures tomorrow or Thursday. I don't think she'll be discharged before that. 

I couldn't find the formula anywhere so they need to give us more to go home with. They are working on getting everything set up and she is going home on Thursday!! 

Surgery never came and removed her bandages. So we can't work on learning about the mic-key button yet. I am anxious to learn about it. I want to feel comfortable before we go home. 

Josh and I gave her a bath tonight. Well, it was mostly Josh. I was pumping. Josh fed her tonight too. 
She weighs 4850g or 10 lbs, 11 oz. 

Day 41The company came out today (right before the Hurricane) and taught me to how use the equipment for the g-tube today.

She got some beautiful pictures taken today as well.  

Here are some of my favorites!

Behind the scenes pictures!