Wednesday, September 11, 2013

Evie at 4 Months!

Time is flying so fast! I can't believe our sweet girl is already 4 months old!

Evie is still exclusively fed breast milk (go me!).  She eats every 3-4 hours still and we just bumped up her bottles to 6 ounces which means she usually goes the full 4 hours between feedings! 

She weighs 19 pounds and is 25 inches long - I'd say she is huge but that may be an understatement! 

She is still spitting up, but not as much. Thanks to the Prevacid and my thickened milk (we thicken with baby cereal) her tummy seems to be more settled. 

Evie still sleeps through the night like a champ! We put her down around 7ish and she sleeps until I wake her up in the morning to get ready for the day. I need to get her transitioned to her crib because she is still sleeping in her bassinet by my side of the bed. Between her breathing problems, the pneumonia and everything else she has been through it is very hard for me to imagine her not being right there for me to wake up in my groggy haze in the middle of the night and not check on her. I guess I can still do that, it will just be a little walk. I guess I will have to start getting her bed ready for her sometime this weekend....tear :(

Evie is starting to hold up her big ole noggin' (90th percentile!) and learning to sit up. She likes to listen to music and watch her brother play. She loves to be spoiled and held all the time but also loves her alone time laying by herself. 

On Evie's 4 month birthday she rolled over for the first time - back to front. We were visiting the Rawsons in Republic, MO and she decided to show off ;) I think I screamed and I kinda didn't know what to do! I wasn't expecting her to be able to roll over so soon. She showed me!

During Evie's 4th month she FINALLY got to meet Adelynn and the Rawsons.  The Rawsons came to visit and we did fun things like BBQ and go to the zoo. We had a blast with them and it was so exciting to have our families together! Gavin and Olivia played and played and laughed til their tummies hurt and Adelynn and Evie had fun staring at each other....haha! They will learn to play together someday :) 

Our physical therapist continues to be very optimistic that Evie will be able to walk, probably even unassisted. To those other SB mommas out there reading this - they understand how HUGE this is! We have been prepared from diagnosis for wheelchairs and walkers and all sorts of things, which we are still prepared for (because things change so much) but to have at least the hope of not needing them is wonderful! Each child develops and changes in their own way just as every Spina Bifida case is its own and Evie has quite a unique case since her nerves were encased in a cyst inside her spine - not outside like most SB cases - yet her back was still open at birth.

She is a true blessing and absolutely beautiful! We can't express enough how much she has taught us in her short 4 month life so far. Our family is most definitely complete with her in it! 

My sweet girl practicing sitting up! 

We still have fundraisers going on to help support Evie's medical bills from her NICU stay and her 2 surgeries so far (back closure and shunt placement). We have been blessed beyond words with the most amazing donations from people all over! Here is an updated list of what we have going on:

Scentsy: Visit this website to place your order. The commissions are being donated to Evie! This is going on until September 29th.

Thirty-One: Visit this website to place your order. 10% of all sales are being donated to Evie. This is going on until September 29th as well.

T-Shirts: We have had enough interest to start collecting money for a second round of t-shirt sales. Please let me know if you would like one. They are $15 and come in sizes from Onesies to Adult 3X (2X & 3X are $2 more). As soon as I get 25 shirts I will place the order. 

Monetary Donations: We continue to get donations to our webpage we have set up for Evie. If you feel led to give in that way you can visit here.

Thanks for all the continued prayers for our sweet little miracle baby! Evie is redefining Spina Bifida one day at a time!

Thursday, September 5, 2013

Neurosurgery Follow Up

Yesterday Evie had her first MRI outside of the womb. She did so great and the tech said they were the best images he has ever gotten on a baby her age...that's our girl!!

We then went to clinic and were supposed to meet with Dr. Elbabaa, our pediatric neurosurgeon and Pam, the physical therapist.  Well apparently Pam didn't feel well so she had already gone home by the time of our appointment. We will meet with her on our appointments on the 18th. 

Evie's head looked great on MRI, they re-set her shunt (since it is programmable by a magnet and the MRI is a magnetic test, her shunt re-sets itself and needs to be fixed after exposure to magnets), and we looked at her growth chart. Her head is perfectly adjusted back on the 90th percentile when it was completely off the charts before her shunt was placed - so that is GREAT news!

Dr. Elbabaa was absolutely glowing when he saw Evie. He said she is the most beautiful baby. He was like a proud papa and we are so happy he takes such ownership of his patients! He held her and played with her and even stood her up to see what kind of function she has.  For a doctor that has so many patients to be so vested is truly amazing. We absolutely love him and are so happy he is our doctor!

We then went up to visit NICU to see if our favorite nurses were up there. We fell in love with 2 nurses there, Lindsey and Holly.  Every time we are at Cardinal Glennon we go up there to see if they are working and we haven't been able to catch Lindsey yet - we have seen Holly once. Well yesterday was our day and they were BOTH there! 

Lindsey came out the door and ran and gave me a big hug. I could have cried I was so excited to see her! If it weren't for her we would probably still be in the NICU - ok not really, but she was a huge help in getting us discharged when we did. Holly was the calm spirit that listened so intently to our every concern and helped get all of our "stuff" done so that we could be discharged. So thankful for both of them. 

We talked for a while and they both held Evie. It was like Evie remembered their voices because she was smiling at both of them :) 

It takes a special person to be a NICU nurse and an even more special person to be so good at what they do and these two women have it mastered! They were truly our light and angels while in the NICU and made our stay so much better! 

We go back to Spina Bifida clinic on September 18th - we will meet with Urology, Physical Therapy and maybe Orthopedics.  Evie will have her urodynamic testing done again and a renal ultrasound. We are praying for just small improvement on her bladder and not expecting any huge changes but small changes in the right direction would be awesome!

Thanks for all the continued prayers - our girl really is our miracle baby! Here is a picture of Evie and Gavin - they seriously adore each other!!