Flu? Shunt? Cold? Teething?

I was so excited for last Wednesday! Evie had been having a few "off" days but nothing was too too alarming until Wednesday morning.  She had been sleeping a little more at school and not eating her bottles very well. It was worse Tuesday than Monday and Wednesday was far worse than Tuesday.

The morning started with our meeting with First Steps.  Susan (PT) got to our house a little early to work with Evie and see her progress then we met with her and Kathi (the coordinator/director lady) to talk about whether Evie had met the goals we set for her 6 months ago and what goals we wanted to set for the next 6 months and what equipment would be needed for her to meet those goals.  Evie had met all but 1 of her goals but we are in the progress of meeting that one...sitting unassisted for at least 10 minutes with both hands playing with toys. She can do this for about 5 minutes so now we are just working on endurance. 

We talked about getting AFOs ordered for her. We went ahead and put in an order for a stander to get her to bare all of her weight for longer periods of time. She bares weight for a couple minutes now but then needs a break so the stander should help with that. We also went ahead and put in the paperwork to get a walker when she is ready.  As soon as she can stand (even with her AFOs) for long(er) periods of time we will order the walker. If that is next month or in 5 months, whenever she can do that we will move forward.

During the meeting Evie wasn't very interested in Susan which is very abnormal for her. Evie loves Susan and usually interacts, smiles and laughs at just about everything Susan does....BFFs already :) Susan laid her down on the floor on her tummy to see if Evie would be interested in toys and instead she passed out, right there in the middle of the floor. If you know my child, you know that is not her norm. She is a busy body and likes to move and play and interact.  She slept for almost the entire meeting (about an hour). Before Susan left we were talking about how weird it was and that she had been getting more and more not like herself the past 2 days. Took Evie's temperature and it was only 98.4 (she usually runs 97.9). Susan agreed that when we got to clinic to make sure we saw neurology to rule out any shunt issues since she had gradually been getting worse and there was no fever we weren't really sure what was going on. 

We got to Cardinal Glennon and went right in for our renal ultrasound. We had a bit of time so we went and visited our friends at Fetal Care Institute (where I received my care during my pregnancy) and one of the finest NICU nurses you will ever meet, Holly, and then headed down to our clinic appointments.  All the nurses were excited to see Evie and see which bow she had on...she has a reputation in that place for cute bows so I try not to disappoint ;) Got to our room and I told the nurses she just wasn't acting right and we would like to add Dr. Elbabaa to our schedule. At that time the PT and orthotics lady had come in as well as our Urology nurse. They were all stunned at how unresponsive Evie was so we took her temperature...102! Just a few hours prior it was fine. We stripped her down and Dr. Elbabaa recommended we get to the ER ASAP after finishing up our other specialties really quick. With everything else going on the past few days and now the high fever he wanted to be sure to get a full assessment to see what was going on.

This is how she was acting at Clinic and in the ER!

Was it the flu? Shunt malfunction? Shunt infection? A common cold? Teething? These are all things that run through our heads. It could be anything a "normal" baby goes through or it could be something much larger having to do with her brain that would require immediate brain surgery.

We got done, headed over to the ER and got a room. They were incredibly busy. Dr. Elbabaa left clinic to come over and check to see how Evie was doing. I can honestly say I will never forget that encounter with him. He walked in, smiled at me and looked at the 2 nurse practitioners that were in our room. He said "I don't mean to intrude on your territory but this is my girl and I love her and I want to make sure she is going to be ok." Our doctors are seriously incredible! He explained to the nurses that he needed them to do a full work up to find the source of the fever (means infection somewhere) and that if all of those came back negative they needed to call him and move forward with a CT scan of her brain. He left us in incredibly able hands.

First up was a few nose swabs and a chest x-ray. Then they needed to get blood and urine for cultures. I explained to the nurse that Evie has incredibly picky veins that usually require the talents of the transport team (the team that goes out and brings the babies to CG after they are born - highly experienced). After the nurse looked at all of Evie's veins she agreed that the transport team would be needed. We got Gerald in from transport and he was able to get a vein in her wrist on the first try. Got her blood drawn and the IV started. They put her on fluids because she was dehydrated and began administering antibiotics in case this was a bacterial infection.

Gerald getting Evie's IV started

While all of this seems like it went by fast I think we were at about 8pm by this point. We had been in the ER since 2pm and at Cardinal Glennon since 10am! 

The nurse and doctors came back in and said Evie's chest x-ray showed pneumonia. After discussing her symptoms and high fever it was decided to go ahead and admit her and watch her over night. We got up to our room very late and I went home to sleep and be with Gavin (my parents had him) and Joe would stay with Evie at the hospital. She looked to be miserable and in pain but we managed to get a few giggles out of her and she was babbling as I was leaving. 

The next morning I got Gavin to school and headed up to the hospital. Evie was doing much better and more like herself in spurts.  She got a huge stocking full of toys and goodies delivered to her room and got another bag of fluids. The doctors decided she could be discharged and we were out of there shortly after noon.  The doctors said she should not spike a fever again and should act normal in spurts throughout the day and be tired/drowsy other times and she is finishing getting over her illness but that if she got any worse she needed to be seen again. We finished out our Thursday at home and got ready for work and school the next day.

The stocking was bigger than her!

Friday morning I got up and got the kids ready like normal. I noticed Evie had a rash on her back and tummy and some on her face. It was raised but not too red although it wasn't normal skin tone either. I took them to school like normal but before I could leave I noticed Evie wasn't acting herself again. She wasn't happy and smiling like she was just the night before. I decided to change her diaper and saw that the rash had gotten much worse and was now all over her arms, legs, back, tummy, face, neck...everywhere. And it was bright red. It wasn't little dots like they explained from the viral infection it was like big welts all of her body. I called Joe and we decided we would take her in the ER as she was not acting like they said she should. 

This is what her tummy looked like she she woke up. You can see the rash is raised!

And then at daycare it turned bright red and it was raised. Huge welts from in her hair all the way to her toes!

We got her to the ER around 9am.  At that same time we saw a bunch of commotion going on in the entry way. We got back to our room and got the charge nurse of the ER who was incredibly friendly. She said that Andy Benes (A former St. Louis Cardinals pitcher) was visiting and had toys to give out. She got us checked in and checked Evie out and since she was stable we got to go meet Andy and get Evie a nice toy. It was fun and Andy even asked if he could hold Evie. They took lots of pictures of her...what can I say, she's a cutie :)

Evie and Andy Benes

We went back to the ER and at that time the nurse practitioner followed us back to our room. She said she reviewed Evie's chart from Wednesday and Thursday and said that because of the type of antibiotic that was given to her in the ER and the fact that her infection was viral and not baterial her body was reacting badly to the antibiotic when it wasn't needed. That with the type of infection resulted in these awful welts all over her body. The nurse said Evie was most likely completely unaware she even had a rash and since she had no fever she was ok to go to daycare. Joe and I took her back to school and they promised to give her lots of extra love which I am sure they did! I went back to work and Joe went home to get some sleep (night shift guys...not fun!) 


Evie has been acting pretty normal most of the time since then although she does still have this rash all over her body which seems to get bright red if she gets hot but overall she is doing much better. I hope this rash is gone quick because I wanted to get Santa pictures over the weekend but didn't want to have that pesky rash in the pictures! Hoping to get them done tonight if the kids are in decent moods. 

Thanks for all of the prayers! They sure are appreciated and our girl really needed them! 

We are now on the donation "clock" for an amazing clothing company out of Illinois that donates 50% of their profits to families that experience large unexpected medical bills.  Evie was lucky enough to be chosen for a donation period and right now is that time. The company is called Fight the Fight and they have a pretty cool logo! You can get anything from bracelets to purses to sweatshirts and t-shirts from their website. We would be so grateful if you wanted to get some cool gear and support our girl! Their website is www.fightthefightclothing.com or you can just click here. 

With all our love,
Heather

Evie is 7 months old!

I am a little late since Evie was 7 months on the 7th (does that make it a golden birthday??? lol!) We have been so busy with preparing for Christmas, moving that dang elf, Dash, which I forget to do all the time, wrapping presents and keeping up with family that I just forgot to post Evie's update for the past month.

She is doing so great! She weighs 22 pounds 5 ounces. She has lost a few ounces but that is ok since we know what is causing it. Evie is no longer spitting up like she was so we were able to stop the cereal in her bottles (pure carbs) so she is losing a tiny bit of weight. We are having trouble with her being able to eat now, though. She was so used to the thickened milk she no gags on it even with a level 2 nipple. We have to add 1/2 tsp of cereal to her bottles so the flow is slow enough for her not to gag. To most parents that doesn't sound like a big deal but that sends red flags all up for us....that dag gone Chiari II makes me nervous! A symptom of Chiari Malformation II is gagging. Evie should be able to keep up with the flow of a level 2 nipple. We have taken the cereal out almost a full month ago and we still can't get it completely out. We did start solids and she is able to take food from a spoon without gagging so our neuro team isn't worried. We will be doing fast paced MRI in March to check her ventricles and Chiari II. 

Evie is doing great with her motor skills! Our physical therapist is so wonderful at teaching us what to do with her and why we are doing it. Evie can now sit up, all the way, for long periods of time! She loves to sit and play with her brother and he loves to play with her on the floor and gets right up in her face and says "Hi Evie" or "boo boo Evie!" - they just adore each other...let's hope it stays that way. Ok, you're right, I'm not holding my breath ;) 

She is capable of rolling both front to back and back to front but mostly chooses to either sit up or lay on her side. She is so stubborn, I have NO clue where she gets that from. 

She can bare all of her weight now on both legs and push up. While it is only in spurts and not for too long we are over the moon that she figured out she could do that! We think alot of her weakness is in her hips and that is causing her the issues. When she was little she was checked for hip dysplasia because her hips were "loose" but an ultrasound and check by the orthopedic doctor proved she didn't have it. So her hips are loose but not loose enough to have hip dysplasia.

Evie now says "Da Da" and it's not just a sound. She deliberately says it and reaches for her daddy. 

She has been battling a constant UTI for a few weeks now. We have her on a really strong antibiotic to kick it in the rear and then she will stay on a small dose of antibiotic for a while every day.

Our every day routine consists of size 4 diapers, 9-12 month clothes, about 20 ounces of formula a day (she's not too big of a bottle eater but her weight and everything is still healthy), fruit in the morning and veggies at dinner. She is a pretty happy baby and is proving to have some diva qualities about her. She has to have someone in her line of sight all day long or she will throw a fit. If one of her teachers walks away she will cry and as soon as they go over to her she is so happy and smiley...such a stinker!

On Wednesday we meet with our First Steps coordinator and physical therapist to go over Evie's goals for the next 6 months. At that time AFOs will be ordered for her as well as a walker/gait trainer. (At some point we are hoping Evie will get strong enough to where she can go to SMO bracing!) We also have our end of the year tests with urology and other clinic appointments on Wednesday. Please keep her in your prayers that everything goes according to plan :)

These are AFOs - they provide more support which will help with Evie's hip weakness right now. AFO stands for Ankle-Foot-Orthotic

This is an SMO - it is barely even visible above a tennis shoe line. SMO stands for Supra Malleolar Orthosis - they provide less support to the foot compared to an AFO.

6 Months!!

I can't believe my baby girl is already 6 months old! I know I say that every month, but seriously, 6 months?! That's half a year!  Maybe it's because we lost a little time in NICU or maybe it's because she is a tad behind on a few things, but I just don't feel like she should be 6 months old yet!

At 6 months Evie weighs a WHOPPING 22 lbs 7oz and is 27 inches long! That is off the charts in both height and weight. Her head is in the 89th percentile which means she is doing good! 

She eats 7-8 ounces every 3-4 hours. We started on baby food and she eats a veggie after her 5pm bottle. We will start food with breakfast next week so she will get a fruit then! Evie's "school" has been so wonderful with our ever changing feeding regimen. It is such a guessing game with her getting everything figured out. We started weaning her off of the cereal in her bottles because she isn't spitting up anymore. In order to get her off the prescription medicine we first have to make sure she is ok with just plain milk. We have her all the way down to just 1/2 teaspoon in each bottle and that is just so she doesn't choke on the flow of the bottle. We have her on a size 2 nipple but it's still a little fast and a level 1 is too slow....oh the drama. So this is our compromise.

We are still having a few bowel issues. We can't quite get her figured out. Too much Miralax, not enough, she needs it now she doesn't. Good grief! We now give Evie 1/4 tsp once a day in her morning bottle. We will see how long that lasts for. Hoping she can figure out her poo and not need the Miralax.

Evie is still sleeping great. From about 7pm - 6am. Can't complain there. She has always been a great sleeper and for that I am thankful!

She got fitted with her foot brace on her left foot to correct her Metatarsil Adductus - see this post about that! She doesn't love her brace so much but tough luck sister, we need to correct your foot early on! She developed a pretty big pressure sore early on so she couldn't wear it for a few days. We had it adjusted and another strap added and now we are in business :)

Susan, Evie's amazing physical therapist, is impressed with her progress so far! She can sit up unassisted for about 6 minutes and then she has to put her hands on her knees to balance. She can push all the way up on her hands and lock her arms and starts to pull her legs up. Hoping she figures out that is how she can gain mobility here soon :) (I know remind me in a few months and I will wish she didn't follow me everywhere!) She is physically capable of rolling over both ways but due to her weight, we think, she chooses to stay put most of the time. She isn't quite able to bear all of her weight yet. She has a few spurts where she will bear some weight on her legs. I am not really sure why or what this is. Maybe she just isn't strong enough yet? We see PT again on Saturday and I will ask about it then...maybe it's just delayed? Not sure...hoping we can strengthen her up to start bearing more weight on those fat little legs of hers ;)

Gavin continues to be obsessed with his baby sister. He loves talking to her, says "Good morning Evie" every single morning, plays with her and likes to "help" her play with her toys. He is a huge help and loves to run little errands around the house for us to get things. We are so thankful he loves her so much and we have avoided the jealousy issues so far! 

We continue working with her daily so that she continues to meet her age milestones. We are incredibly blessed with caregivers that do wonderful work with her during the day and a physical therapist that is out of this world amazing.  At this rate, Spina Bifida doesn't stand a chance. 

We go to SB clinic on December 18th but that is to just check in with the Urologist, PT and Orthotic people. Her next Neuro appointment isn't until March (I think) and we will see the Orthopaedic doctor at that time too to see what he thinks about mobility in the future and any possible interventions that she would need. 

God is good, all of the time. We are so blessed and don't take any of these blessings for granted. To Him be the glory!

Happy Halloween!

Gavin was a cowboy and Evie was an Indian. I don't know what I am going to do when they don't want to be in coordinating costumes, my heart might break! They are so cute together!

Gavin's outfit was complete with a toy gun, horse, cowboy hat and of course, his boots! I made Evie's costume - it's hard to see all I did but it was complete with 2 rows of fringe and a feather headband!

This year was so much fun! Gavin is old enough to trick-or-treat now and we had big plans for a fun evening! My parents made chili and we had wood and our fire pit ready to go complete with marshmallows for roasting...and then the rain wouldn't stop. So much for that, so on to plan b!

Plan b included getting drenched in the rain because it was so windy the umbrellas didn't provide much dry-ness.  We attempted to take the double stoller with Evie but since the wind was so intense the rain was getting her soaked. So to avoid a sick baby she stayed at the house with grandma and grandpa handing out candy while mommy and daddy took our cowboy trick-or-treating.

Gavin had so much fun! He is usually super shy but he walked right up to the houses and said "trick or treat" and then "thank you" when they put candy in his bag.  Usually he got another handful of candy for being so sweet and having good manners- just what he needed. 

Right as we were about to be done walking the neighborhood it quit raining so we stopped at a few more houses. It was only 7pm when we got home so we decided to do the traditional dump your candy on the living room floor routine. Mommy checked it to make sure it was all safe (made me feel really grown up! haha) all of it was good except 1 piece - not too shabby! My mom always ditched all the rules on holidays and let us eat whatever we wanted when we wanted so I thought I would keep the tradition. I am usually very strict on sweets but Gavin ate his little heart out. Double fisting it most of the night and past his bed time but it was worth it to spend the time with him and see that smile!

Gavin got to sleep around 8 and insisted (for the second night in a row) to sleep with his boots. He is obsessed with them. I figure it can't hurt anything to let the kid sleep with his boots so I obliged with his request. This morning he woke up with no PJ shirt on, just the pants and his boots on. 

This year was a success even if it did rain on our plans. Hopefully we get to do the firepit and mallows next year.

My mommy heart is full and happy! Love my babies to the moon and back! Hope everyone had a fun Halloween with the kiddos!!

Evie at 5 months!!

My baby girl is 5 months old!! She is getting so stinkin big! Evie is about 21 pounds and right around 26.5 inches long.  Chunker I tell ya :)

Evie is still on breast milk only. We have to thicken it up with rice cereal because of her reflux but she is still doing great with that. She eats 6oz every 4 hours and let's just say she never misses a meal!

We just started her on prune juice (to keep things going).  She gets a 1/2 ounce twice a day and we hide her ditropan in it.  We are hoping this keeps her more regular without having to add yet another medication to her daily routine. Pray with us that we can get her systems working properly without further intervention!

We finally transitioned her into her crib.  I was ready to stop tripping over the bassinet in our room but I was not ready to have her so far away from me (it's a whopping few feet across the hall, but still!) We got a video monitor in her room all set up so this worrying mommy can rest a little easier knowing I can peek open my sleepy, dry eyes in the middle of the night and make sure she is breathing! I can zoom in the camera and it gets really close to her tummy so I make sure it is still going up and down. (I really do that! ha!!)

During the day Evie isn't on any type of nap routine but I think this is something we are going to have to get her on.  She sleeps through the night just fine but doesn't take distinct naps during the day. That's hard for this OCD, over-scheduled mommy, I prefer set nap and bed times around the house!

Gavin loves helping out with sissy. He likes to "help" feed her and burp her and likes to tell me she is "poopy" every chance he gets. It is so much fun watching him interact with her. His most recent obsession are her cheeks - he goes right up to her and touches them ever so lightly, as if to pinch them and says "Evie Evie Evie Evie Evie" over and over AND OVER again! He also likes to tell everyone "Evie pretty". He loves to point out her bows and thinks she is extra pretty when she has one on.  When mommy forgets to add a bow to an outfit he will say "Evie bow go?", so mommy obliges and puts a bow on her head :)

Evie is doing great at physical therapy.  We know for sure she has function at L5 and we are pretty confident she has S1 but only time will tell.  We practice making her bear weight on her legs.  She can roll over both ways but usually chooses not to, probably because she has all that extra weight! We are working on sitting up which she can do for about 15 minutes with a little help from a bobby pillow. She loves looking around but that head of hers starts to get heavy and her posture starts to slouch. It is fun watching her progress over the weeks and see her PT get excited when she makes a new accomplishment. Have a mentioned how much we LOVE our PT?!?! She is the best!! The absolute BEST!

At the last SB clinic appointment we had the ortho doctor decided we needed to start bracing Evie's left foot.  She has metatarsus adductus and it seems to be getting worse.  This is completely correctable with the correct intervention.  We had her sized for a brace that can be adjusted to gradually stretch out that muscle under your foot so that her toes quit pointing in.

Hopefully the brace gets here soon.  We got approval through First Steps of Missouri (an awesome program for certain children with disabilities that is state funded) and we are now just waiting on final approval and for the brace to get here. Hoping it doesn't cause her too much pain to have her foot stretched but I know this is what is best and our PT has been recommending a brace for almost 2 months now - just had to convince our ortho!

We have a couple exciting weeks coming up. The first annual St. Louis Walk N Roll for Spina Bifida is this Saturday and we are so excited to participate.  We are so excited to share this time with our friends and family. We have people from our daycare coming, co-workers, friends and of course the whole family! We will be sporting our shirts and will have a fully decorated stroller and signs for Evie. Then Halloween - Gavin is going as a cowboy and Evie as an Indian. Wish me luck as I make Evie's costume this year!

God is so good! We have a beautiful and perfect daughter and the most handsome and perfect son. Blessed beyond words!

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!

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!! 

T-Shirts!!!

A good friend of mine and Joe's is a graphic design artist and is oh so talented! He has graciously designed a t-shirt that we are going to use as a way to raise funds to help with Evie's medical expenses.  

The shirts are $15.00 and can be paid by paypal (just comment with the email address you use for paypal and the size shirt you want and I will invoice you) or you can make a donation in the appropriate amount on our page at www.gofundme.com/EvieGrace.

The color is a dark gray - we are so excited to get our hands on them. I have big dreams of all sorts of people sending me pictures with them wearing our shirt!

Evie at 3 Months

Evie weighs 16 pounds 9 ounces and 24 inches long. YES YOU READ THAT RIGHT! She is HUGE! We looked up in Gavin’s baby book to see how old he was when he weighed that much and he was 5 months old! I guess momma’s milk is yummy!

I am still feeding her only breast milk. I pump every 3 hours and once overnight and so far so good! I have a ton frozen which is such a dramatic difference from when I had Gavin I was just about done nursing by this point since my supply had diminished so much. I am very, very thankful for this gift I can give my girl and hope I can start getting her nice and healthy (besides her weight!)

She eats 5 ounces every 3 hours and has a major issue with spitting up still.  We add cereal to my milk to help settle it in her stomach and help with the vomiting, it seems to be working. We add 1 tsp per ounce.

Evie has been sleeping 10-12 hours at night. Yes, we are very lucky! She is a great sleeper, unlike her brother!

She started daycare and that has been going wonderfully.  They all love her to pieces and love seeing what outfit and hair pretty she has on each day! I love to dress her up, it’s so fun! I think I am making up for the first 5 weeks I couldn’t dress her at all :)

Gavin still adores his sister. He absolutely loves her. He loves to hold her and kiss her. He helps bounce her in her bouncy chair and loves to “help” feed her.  He is also obsessed with me pumping and loves to call mommy’s boobs “boo boos” so needless to say we don’t have boo boos at our house when he hurts himself, we have “owies” – we don’t need the poor kid thinking he has a boob growing on his knee!! Lol

We cath Evie 3-4 times a day and she is on Ditropan to help with her overactive bladder. She also sees a physical therapist once a week and she is doing great!

We are incredibly blessed with such progress and hope to keep moving in the right direction. 

Here’s to our miracle baby! Happy 3 months sweet pea! 

Evie at 2 Months!

At 2 months Evie weighed 13 pounds 2 ounces and was 23.5 inches long.

She eats 5-6 ounces every 3-4 hours and is sleeping through the night. Usually around 7-9 hours at a time. We are so thankful!

We started Physical Therapy and we absolutely love our therapist; she is so wonderful and patient and gets excited with even little improvements. I just love her!

We went to the zoo for the first time and Evie slept through most of it but decided to wake up to see the new Sea Lion exhibit - she wasn't impressed and went back to sleep! We also went to Lake Rathbun, Iowa for a camping trip and to go to my dad's side of the family's family reunion.  It was nice to see them all as we haven't gotten to see them in years due to the long distance (springfield, mo to iowa is a haul!) but now that we are back in St. Louis it is far more reasonable! Most of that side of the family had not even met Gavin so it was nice to show him off and for them to see and meet our miracle baby as well! It was a fun time and I am very thankful to my parents and sister for all of their help in caring for the kids because Joe had to stay behind to work his last weekend shift!

Urology: During her appointment with urology to do a check up of her renal ultrasound it was discovered that Evie was not emptying her bladder all the way and has an overactive bladder (see previous post about full details) so we started cath'ing her daily and started her on Ditropan. She tolerates both very well. She is such a trooper!! 

Shunt: It was during Evie's second month of life that our Nuerosurgeon decided it was time to go ahead with the shunt.  Evie's head grew dramatically in a very short period of time. We went in to the Neuro clinic and were admitted that day and the shunt was placed the very next day.  Evie tolerated the surgery very well. I think it was much harder on mommy and daddy than it was on her. I hated to see her hair get shaved off - but hey, at least they kept it for us :) After surgery within 2 days her head already shrunk about 1-2 cm.  You don't want it to shrink up too bad because then the plates will start overlapping and that can be just as dangerous as her head getting too big.  So we are at a good medium now. We are so very thankful for our beyond amazing surgeon.  We couldn't imagine having any other surgeon and we have been soooo soooo happy with his care for her to date!

Side Note: Because Evie had to have her shunt placed sooner than expected there was no choice but to FINALLY flip her over to her back for surgery. This meant mommy and daddy could finally hold our girl for the first time.  It was amazing. I just stared at her and cried.  I can say I really never set her down from the time I could hold her until it was time for daycare.  I would give her up for short amounts of time for family to hold her but that is it! 

During Evie's second month she started breathing very loud. We visited the doctor too many times to count, sometimes in a hurry and once we ended up in the ER.  We now know she has Laringomalacia and we are watching it closely.

My little man at 18 months!

Gavin weighs 31 pounds and is 32 inches tall.  He has had quite a few haircuts because his hair is so thick and grows so fast!

Eating habits: He loves food! If you ask him if he wants to eat dinner he says “no, snack” (pronounced “nack”) so he thinks every meal is a snack! He loves almost anything you put in front of him but some of his faves are pizza, pasta, chicken nuggets, mommy’s grilled chicken, mashed potatoes, green beans, bananas, grilled cheese, chips, pears, asparagus (go figure!) and pretty much any kind of cheese!

Sleep: He (finally) consistently sleeps through the night.  He takes one afternoon nap every day ranging from 2-3 hours.

Daycare: He loves his daycare and his teacher right now is Ms. Jenny. He calls her “ne ne”. On the way to school every day he screams (and I mean screams) “ne-ne, ne-ne” so it makes me happy he likes to go there and play with his friends.  Now that Evie is at school with him he gets to go visit her in her room.  The first time he got to go see her he was so confused. He kept looking at Jenny then looking at Evie like “what is she doing here?” – so precious!

Hobbies: This child LOVES motorcycles. I mean, he likes games with motorcycles, motocross, Harleys, anything that has to do with a bike, he loves ( I think I know what theme he will be having for his 2^nd birthday!). We got him a trike that has the Harley logo on it and he rides it everywhere, all over the house! He loves his puppies and yells at them all day long. He also loves to feed the dogs which is a losing battle. He just laughs and laughs when they eat the food he throws at them.  He loves his baby sister and refuses to call her by name (which he pronounces “eebee”) and instead calls her “baby”.  Every baby picture in the house he thinks is her – he doesn’t think his baby pictures are him! He loves to swim and splash and play in the water!

So smart!: This kid is smart beyond his age. If you show him any of his animals in his Noah's Ark toy he can do the sound they make (lion and pig are his favorite). He knows so many body parts including, eye, nose, ear, mouth, teeth, hair, knee, elbow, toes and most importantly his belly - which he pronounces “beyee” – it’s the cutest thing ever! He loves to sing and dance in the car and “read” us his books. He loves his bible which happens to be mine from when I was a kid – so proud!

Gavin, you are growing to be such a big boy! We are so proud of you and the wonderful big brother you are to your sister. Mommy and daddy love you so much and couldn’t ask for anything more!

Late Updates

I don’t even know where to start with the updates.  It’s like ever since I could hold my sweet girl the blog went out the window…and I was doing SO good on keeping it updated!

Evie is doing wonderfully! We just moved into our own house and we are loving it! Evie is now in daycare full time at the same place Gavin goes. The daycare has been nothing short of amazing with all of Evie’s needs. So here is the latest….

Physical Therapy: Evie is part of the Missouri program called First Steps.  She gets a physical therapist to come out and do therapy with her once a week for a very discounted price and even free sometimes.  We absolutely adore our therapist, it’s like she was meant for us! She is so wonderful and energetic, we seriously just love her.  Evie is doing great. She is a little advanced with her head strength so now we are working with her to begin getting used to putting weight on her little legs.  She was diagnosed with Metatarsil Abductus (her feet turn in a bit by her toes).  She does not have clubbed feet, though, which is good! By the grace of God, Evie gained enough strength to begin turning both feet to a neutral position without needing any braces! Take that Spina Bifida!!! She is cuter than ever and I love taking pictures of her doing therapy because you can tell how much she is concentrating!

Bladder Testing:  A few weeks back we took Evie in for more testing on her bladder.  Her renal ultrasound before NICU showed enlarged kidneys so they wanted to check things out again.  Much to our dismay, the test results were not what we wanted.  Her bladder is both overactive and not emptying all the way. She had a UTI from the old urine she was holding back :( poor girl!  We had to start her on Ditropan (medicine to help with bladder spasms) and learn to catheterize her immediately.  I was so upset having to cath her, I thought we were out of the woods with that since she was peeing.  After learning to cath her and seeing it’s not that big of a deal, I am so much better.  IF that’s all we have to deal with, we are doing pretty darn good! Most people (without knowledge of SB) are very confused about the cath’ing.  She does not have anything permanent or a bag or anything like that. We simply insert a small catheter and drain her urine into the diaper and then take it out and throw it away. We use new supplies each time so it really isn’t messy at all. 

We are now having issues with the Ditropan because she is not peeing at all in between diaper changes and when we cath her we get a whole ton of urine so we are trying to trouble shoot and see what the problem is and get her squared away.

Noisy Breathing: So on a side note and totally not related to SB Evie has been breathing SO loud and I mean like so loud it wakes me up at night.  It has been going on for over a month now. We have been to the doctor more times than I can count and the co-pays are beginning to be obnoxious! Every time they told me just to watch it that it was getting a little better. So we watched and watched until I couldn’t handle it any longer.  We got a referral to a pulmonary specialist who at first said we were in the wrong place. He referred us to an Ears, Nose and Throat specialist (ENT) but before we left he ordered a chest x-ray.  Well thank goodness he did because my poor little girl has pneumonia.  Seriously, can this child catch a break??? Isn’t everything else enough?? So, we started her on a new, more potent antibiotic (she was already on one for her UTI) and it seems to be working…or at least I hope so. She goes back at the end of the month for a check up on that.

ENT: So we go to the ENT last Friday and they did a scope of her throat while she was there and awake…good thing Joe took her and not me because I would have been a mess.  She has been diagnosed with Laryngomalacia – the flap over her airway doesn’t work properly.  It opens and closes either not enough or too much depending on whether she is breathing in or out.  She is not at risk to stop breathing but we do need to watch her carefully as her case is considered severe.  If it gets any worse the doctor wants to do surgery to cut off part of her flap.  This also explains her severe reflux which brings me to the next update!

Reflux: So Evie has been puking after EVERY.SINGLE.FEEDING. No matter what we try, sitting her up to feed, keeping her upright after eating, it doesn’t matter. We tried the first kind of medicine for reflux and that did nothing so now she is on Prevacid which seems to help but boy is it expensive! She still spits up but maybe only once a day and not nearly as much as  before. Before, it was puddling up…gross, I know!

We go back to SB clinic on September 4^th and the 18^th (of course our doctors couldn’t both be there on the same date!) She gets a bunch more tests done to check on her shunt and her bladder. Be praying everything looks good and no need for any  more check-ups for 6 months, that’s our goal!

Medical Bills: Our medical bills are now out of control.  We have applied to all of the state aide we can and we aren’t getting anywhere with it.  We pay almost $500 a month in medical bills and it is quickly draining what savings we did have.  It breaks my heart that my family is in this much strain but our girl is so worth it.  We have started a gofundme page to help raise funds for her medical bills as well as several fundraisers with Thirty-One, Scentsy, Jordan Essentials, t-shirts are in the works, a baby quilt auction and a very sweet friend has offered her time and talent to sell some mini sessions which she will donate all of the money to Evie! Let me know if you want to order from any of those! Our page for gofundme is www.gofundme.com/EvieGrace - or you can just click here thanks for your donations!

Thank you all so much for your continued prayers and encouraging words for my family! God is SO good!!

PS- I really hope to have pictures of her up soon. It will be the longest post of all time and go from birth to current! I promise, I am working on it!

Does Anything Ever Go As Planned????

Tuesday morning Evie's home-health nurse came by to check on her. She comes once a week and has been a true blessing to us.  Even if it is just our weekly reassurance that her back looks good and we are doing everything correctly...I need that.  So, she came on Tuesday and did the usual, weighed Evie (11lb 11oz - what a piggy!) and looked at her back, all is looking well, and then measured her head (as usual).

Her head circumference was 2 cm bigger than it was on Friday when the home-health nurse was at our house. This was quite alarming as her head was only growing about 1 cm PER WEEK up until this point.  We knew she had hydrocephalus but it was a slow growth of her ventricles and Dr. Elbabaa decided it would be best to have her back fully healed before surgery. The plan was to wait it out until July 2nd and place a shunt at that time if her head had grown any more. We were prepared for shunt placement for the 2nd.

So, since her head grew so dramatically I thought I better call Dr. Elbabaa just to let them know.  I spoke to his nurse Rachel (love her!) and she asked me if she was acting normal otherwise, she was, so we decided to continue to watch her but that if Evie started vomitting with eating we needed to call her back.  Low and behold, I feed Evie about 20 minutes later and she pukes 3 times, coming out her nose and all. 

I called Rachel back (after much convincing from Joe - I felt so stupid for calling back so soon) and she said to come in to clinic (Dr. Elbabaa has a neuro clinic on Tuesdays and this prevented us from having to pay the stupid ER co-pay). She told me to get there ASAP and to have a bag packed....I knew what that meant.  I called Joe to let him know to meet us there after work and my mom was already on her way. My dad offered to drive us there so we didn't get stuck with 2 cars at the hospital and we were off.

We got to clinic and they measured her head again, it was actually about a half cm bigger than what I had thought.  They thanked us for coming in and said that we were on top of the game and good job for knowing when to call.

Dr. Elbabaa came in (with 4 other doctors/nurses - that made for 8 people in a tiny exam room) and he said we needed to place a shunt....TOMORROW! He asked if I was prepared for the hospital stay that night because he wanted to admit Evie right then. I said I sure was because Rachel told me to pack a bag. Dr. E laughed and said "if only all my parents did what Rachel said!" Made me laugh.

They admitted us to TCU (Transitional Care Unit - like ICU step-down) room 3200 and we were going to be there until Thursday as long as everything went well.  Surgery was planned for 9:30 am on Wednesday. 

Once in our room in TCU a nurse came in to get an IV started for Evie because they needed labs in order to procede with surgery and they would obviously need an IV for the surgery.  To make a long story (a 5 hour story) very short, no nurse could get an IV started. They tried 7 different times, causing my girl to scream her head off each time. They gave her a rest and ordered the tests they could to be collected via heal prick instead. This caused her heals to get poked around 15 times but there was still 1 test that HAD to be drawn by IV. This meant we had to get a nurse in there to have an IV started before the morning to get the test run and get enough antibiotics in Evie (since her wound on her back is still partly open, her risk for infection is higher so they wanted more antibiotics).

At about 9:30pm a nurse from the transport team (the same team that brought her over to Cardinal Glennon after she was born) happened to be walking down the hall delivering a patient and asked if anyone needed anything. Well, actually we do, thanks for asking! She came in to Evie's room and got everything ready, I told her she was being pretty optomistic getting the tape ready and everything and she winked at me - like "I got this". 

One poke, no digging around, and she had the IV in. She drew the blood from the IV and then sealed it off. So now, by the grace of God, she had her blood for her final test and the IV. THANK GOD!!!! My heart was already broken from watching Evie in pain all night and now we were set.

[side note from the night - we spoke to the plastic surgery department who said
Evie could be released to her back for surgery and for the purpose of getting an IV in and then could recover on her side after surgery for a few days and then be released to her back full time.  This allowed me to hold her for the very first time like a "normal" baby.  We video-taped the nurse flipping Evie to her back for the first time - we both cried. I had never seen my daughter's full face since she was born - 5 weeks ago.  It was wonderful, I was glad to see her but it also made me sad because I saw how big her head really was.  It was quite difficult to judge the size of her head when she was on her tummy and you could only see part of her face at a time. At this point I was happy with our decision to proceed with the shunt a few weeks early.]

Wednesday morning Dr. Kemp (neuro doc) came in to mark Evie's head for surgery.  We waited around a bit in the morning and they were ready for us at about 9:00 am - holy cow, we were actually going to be on time! We walked her down to the OR holding area and then watched her get wheeled back.  I felt helpless but knew it was what she needed to feel better. [the doctor said she has probably had an enormous headache for a few weeks due to all of the pressure on her brain from the fluid]

She got wheeled back around 9:45 and we got the call at 10:00 am that they had just started surgery.  At 10:37am Dr. Elbabaa came and got us from the waiting room, they were already done! That was lickity split! They had us prepared for a 2 hour surgery!

Dr. Elbabaa said everything went perfectly. When he placed the shunt in her ventricle a lot of fluid came off the brain. They put the valve on a setting that drained a minimal amount of fluid just to make sure she would not drain fluid too fast.  [her shunt is the "fancy" kind that can be programmed by a magnet on the outside of her head preventing multiple surgeries to correct the amount of fluid drained].

We saw Dr. Elbabaa again that evening and he reassured us everything was looking great. As long as Evie continued to eat she would be able to go home in the morning.

Thursday morning came quickly and Evie was still eating great.  We saw Dr. Elbabaa and Dr. Kemp again.  They scheduled Evie for a head ultrasound to take a look at her ventricles and make sure the size was going down.  They decided to re-program her shunt to allow more fluid to be drained because it wasn't making the progress they expected. It was no big deal, easy peasy and they said the discharge orders would be entered.

We all know hospitals don't work quickly so we didn't get out of there until 3:30 in the afternoon but that's fine.  Dr. Kemp sent orders to the medical supply place to let them know Evie didn't need her apnea monitor anymore and we were off!

We got home, got her situated, Joe went to pick up Gavin and we just tried to keep Evie comfy the rest of the night.

Yesterday we took of the dressings on her head and tummy (incision on the head to place the catheter and the valve and on her tummy to make sure the tubing from the valve to her tummy was where it needed to be and to coil up the extra tubing - there needs to be extra to accomodate growth). She did pretty good all day yesterday but was still kind of clogged up from the anesthesia so the night time was a little rough.

She is now comfortably sleeping in front of me and we are so excited that she can go to her back tomorrow! We will get to hold her like a normal baby!! YAY!!!  Her back is continuing to heal and much to my surprise it doesn't look any different than before. I was so worried we would mess something up. 

Even though this didn't go as planned as to the date, everything about the surgery went perfectly according to plan.  I guess my girl likes to be 2 weeks early for all of the plans I make for her. She came 2 weeks ahead of her scheduled delivery and now she wanted her shunt 2 weeks early as well.  We are now on the road to recovery and hoping this one is much faster than what we have been dealing with for her back.

Thank you so much to all of the prayer warriors out there especially on Tuesday during a very difficult time for us.  God is working a miracle in our girl - you watch, she WILL walk!! Much love to you all!