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!

Evie at 1 Month

It's hard to believe that Evie is already a month old!

At 1 month old Evie weighs 11lbs 1.5oz.  (Not sure on length as we can't really stretch her out while she is healing)

She eats 5-6 ounces every 3-4 hours. I pump every 2-3 hours to keep up my supply to keep up with my hungry girl.  So far we have (probably) over 200 ounces frozen for our girl when she hits another growth spurt! She hasn't been on formula since she was 3 or 4 days old!

At night she sleeps anywhere from 4-6 hours at a time.

She is not a fussy baby.  She fusses to get fed and then is pretty content until next feeding. Recently she has been restless, as I'm sure all of us would be if we were on our stomachs for a month straight!

Her hair is getting much lighter!

Big brother LOVES his sister. Gavin always runs straight to Evie when he comes home from school and says "buh-bye" when he leaves the room for any reason! He rubs her head, helps feed her and blows her kisses.

Evie smiles all the time. She likes to hum when she sleeps and makes faces at me all day long. 

We still haven't been able to hold her yet. This makes my heart sad and my maternity leave seem like it's flying by. I only have 7 more weeks left and I will be spending every waking moment holding my girl once I can. Sorry family and friends - you will be alloted 5 minutes but then I get her back! (you think I'm kidding - wait and see!)

She is growing like a weed and as content as one could be.  We are very blessed with a good little girl.  Her back is looking wonderful and we hope another week or 2 and she will be able to be on her back.  We are now sending updates to the plastic surgeon via e-mail with pictures so we don't have to keep packing her up. 

(I have some super cute stickers for her but since she can't be on her back I haven't taken them yet. I plan on taking some improvised pictures as soon as I have help!)

God has truly blessed us with the most perfect little girl. We can't imagine our lives with any other daughter, she is perfect and perfect for us.  Thank you sooo much for all of the prayers and kind words!

Our First Myleo Clinic

Wednesday, June 5th was our first appointment at the Myleo Clinic at Cardinal Glennon. (Myleo - short for myleomeningocele aka Spina Bifida). For those of you that don't understand the clinic atmosphere here is a short description.  We have 1 appointment time and we see all of the doctors we need (all different specialties) at one time in one room. 

Our appointment was at 1:30, we got called back to our room.  On our way back we saw Rachel, Dr. Elbabaa's nurse (nueurosurgeon). She said hi and that she would be in in a few minutes.  We got checked in by the nurse, she asked all the typical questions and then told we would be seeing a few doctors.

First up, Dr. Elbabaa.  [before our clinic appointment, Evie had a follow up head ultrasound to get another look at her ventricles to determine if they are growing or not] Dr. Elbabaa was very pleased with her healing on her back. He told us he is very impressed with the amount of movement she has in her lower extremity. She is able to move everything all the way down to her feet which is unusual for a baby with a lesion where hers is (L4/L5). It all goes back to the fact that none of her nerves were dead when they went in for the repair. Yes, nerves were damaged but none dead. That means no total loss of function, things just might not be as strong as they should. Next, Dr. Elbabaa wanted to talk about the findings from the head ultrasound.  Her ventricles have increased in size.  Since the time of her spinal closure they have doubled which isn't good.  Right now her head is soft (as all babies' heads are) which is allowing her head to expand and not endure any brain damage from the extra fluid on her brain.  He said we need to place a shunt.  This is exactly what we were hoping to avoid but I would rather not have her have brain damage, so shunt it is.  Dr. Elbabaa wants to do another head ultrasound on July 2nd and he said if they have grown even the slightest bit we need to be prepared to be admitted that day and have the shunt placed the same day.  The shunt is a small catheter that will be placed in her brain and go (under her skin) down to her stomach where the excess fluid will be absorbed.  While it will completely solve the issue of the extra fluid on the brain, shunts do come with a gang load of other potential issues. There are issues of malfunction, revisions, infections and of course symptoms of all of these things are the exact same as the common cold - fever, not eating well, vomitting, lethargic - so this should be fun. I am trying to stay positive but I can't help but be worried since she will be undergoing another surgery - surgery in and of itself comes with its own set of risks. BUT GOD will provide and she will be watched after. Another bump - we can handle this!

Next, we met with the physical therapist.  She too was over the moon excited about Evie's movement.  Evie does these back bend things where her feet end up over the middle of her back (remember she is on her belly!) The therapist was able to witness all of Evie's crazy scooting antics and acrobats and said she has a great prognosis! Her strenght overall right now is a 3-4/5, I'll take it (5 is what non-SB people have). We talked about Evie's left foot which our PCP (primary care physician) brought to our attention.  It is a little "tight". The therapist said Evie was on her way to getting a clubbed foot but since she was a little early we probably prevented any further damage.  We have a little exercise we perform on her foot every time we change her diaper and we can already see a difference.  Right now Evie's function is at the lesion level of S1 - this is AWESOME! That means she is performing at a higher level than her lesion, medically, says she should.  They predict (with 75% assurance) she will be able to walk unassisted! TAKE THAT SPINA BIFIDA! While we will, of course, have to wait and see (the name of this game) that is providing us great hope and motivation!

We then met with Orthopedics. They couldn't do much. They wanted to check her hips for displasia but since Evie can't be on her back, they couldn't. Instead, we talked about what their department does. I loved how our doctor put it "we will take what your child can do and enhance it so they can function the best they can with the abilities they already have". I thought that was wonderful.  He explained that sometimes he can get children walking, even with assistance, but as they grow older they become discouraged and choose to be wheelchair bound to keep up with their peers. He said it's all in the family and how the child is raised. If the child is raised only to know that they will have challenges but that we will overcome them and that just because something is more difficult doesn't mean it can't be done, then a child will have a much greater chance of continuing with walking rather than choosing a chair.  We hope to instill these values in her at a very early age :)

We are waiting to meet with the Urologist she was out of town.  Before Evie got discharged from NICU they did a renal ultrasound which showed her kidneys were enlarged so we need to talk about a plan to watch that.  Pretty much kiddos with SB usually have bladder issues and the enlarged kidneys could be an indicator that Evie isn't able to fully empty her bladder and may need to be catheterized during the day to make sure she is getting empty to avoid UTI's and kidney infections.

Our next appointment will be July 2nd and we plan to have her shunt placed that same day.  Please keep our sweet Evie Grace in your prayers!

Evie on the exam table at clinic.  Since we can't dress her, we have to have headbands and bows galore :)

Taking a snooze while we wait!

Home Sweet Home

Overall, being home has been WAY easier than being in the NICU and home.  It has its difficulties though.  With Evie only being able to be on her tummy still we are not able to hold her so when chasing after Gavin it is difficult to have her in her bassinet or pack n play and us somewhere else.

We have made do with the help of family stopping by the help out with the kids and the constant help of my parents. It will be much easier once we can hold our sweet girl and once we are in a permanent place where we are all on one level instead of being so spread out.

We have a home health nurse that comes once a week to check on Evie's incision and to make sure she is gaining weight, we love her!

We have had the First Steps coordinator come over to get our information and request the appropriate therapists come over to assess Evie. We are looking forward to that.

The Friday before Memorial Weekend we had a pretty big scare.  Evie managed to pop about 5-6 stitches on her back where she wiggles a lot.  It happens to also be the spot which is healing the slowest.  With the holiday weekend looming we were worried her back would get worse over the weekend and wouldn't have access to our specialists (the ones that actually operated on her) so we called the nuerosurgeon.  He asked that we come in to the Cardinal Glennon ER.  So, we packed up Evie and took the 45 minute trip to the hospital.  We get in to a room and they call our neurosurgeon's nurse to come and take a look at her. They were worried spinal fluid might be leaking which would mean part of her actual spinal repair would be damaged.  They took a look, decided what we were seeing was tissue trying to form and said to keep an eye on the incision but that we really needed to talk to the plastic surgeon to make sure they didn't want to stitch up the opening.  The opening was so big that it was 5mm wide and you could see the next layer of stitches under the skin.  We had to wait for almost 4 hours for the plastic surgeon. When she finally got there she said she wished it would have held up better but that it still looked great.  We were to continue with our current plan and as long as the spot didn't get any bigger we should be good to go. What a relief, but what a long day!

We have had many visitors to the house and are so thankful for everyone that has cooked for us, it makes my life much easier and my heart is warm knowing my family is getting a home cooked meal instead of some frozen thing!

We have been doing well and Evie is looking good. So far our Chapter 3 is going great with a few bumps in the road, but hey, who would want a bump-less story? Wouldn't that be boring??

Thanks for the continued prayers!

Discharged!

It was a long road but Evie was discharged from the Cardinal Glennon NICU on May 17, 2013.  10 days was enough for us!

The week she was discharged we got the most awesome nurse 3 times! Her name is Lindsey and we owe everything to her for getting us the help we needed to get out of that place! On Monday was the first time we had her. She walked in and was a tiny little thing with long blonde hair. She had a big smile on her face and said "Hi, I'm Lindsey, I'm your nurse today!".  She was so upbeat, I knew I liked her already. She checked on us often and always made sure I had everything I needed.  She was so gently with Evie and made sure we knew everything we needed to know.  She answered all of our questions without being annoyed, it was quite refreshing.

On Tuesday, we got Lindsey again! I was so excited when I walked in and saw her in Evie's room!!! By the afternoon on Tuesday Lindsey asked me what the plan was. I was confused, afterall, she was the nurse, you tell me the plan! She said, well, when are you getting discharged?  With a heavy heart I told her in 2 more weeks. She was stunned and confused. [Monday evening the plastic surgeon resident stopped by and said that Evie needed to be on her tummy for 2 more weeks. I was completely heartbroken. 2 more weeks trying to keep my family together in 2 different places. Feeling helpless because I can't care for my newborn and heartbroken that I wasn't there for my little man at home. I was going through the motions of life, completely exhausted in every sense of the word.] Lindsey said there was no need for Evie to be there that much longer and that our neurosurgeon and plastic surgeon needed to talk to figure out a plan. Communication between those 2 departments had been impossible from the beginning.  Neurosurgery would say she could be on her side the same day plastic surgery said 2 more weeks on her tummy. Nuerosurgery would say we could go home, plastic surgery would say 2 more weeks. We were so confused, had no clue what was going on and didn't know what to do. Didn't know if that was normal, we just didn't know.  Lindsey assured us she would take care of it.  Within hours she had neurosurgery and plastic surgery nurses coordinating their visits to our room.  It was decided (after speaking to the actual doctors not the residents or nurses) that Evie could maintain her care by us at home and continue to be on her tummy at home! ALAS! An answer.

Lindsey didn't work on Wednesday or Thursday but she would be back Friday. Wednesday we got a nurse that I absolutely disliked and Thursday we got our second favorite nurse, Holly.  Holly is a totally calm spirit that is on top of everything.  She knows her stuff, is stern when she needs to be and overall just aweomse! She told the attending pediatrician that there was no reason we couldn't maintain the same level of care at home because we did everything every single day in NICU. She told them we were perfect to go home as long as we could get a heart monitor for Evie since she would have to be on her tummy (SIDS is obviously a huge risk with a baby on their tummy).

So Thursday morning we got the go ahead to start the discharge process.  Holly said that we would most likely not get discharged until Friday between noon and 3. Holly coordinated so much for us on Thursday. Evie got her hearing test, Joe and I watched 4 videos, got trained in infant CPR, filled out paperwork for First Steps (such an awesome program!), got Evie her immunizations, called the medical supply place to get them over so we could get Evie fitted for her heart monitor and Joe and I trained on the monitor.  She did all of this while discharging another patient across the hall and caring for (who we dubbed) "the crabby baby" -- you could hear him crying all the way down the hall! We were so thankful.  If we didn't have her on Thursday (and got the same lazy nurse we had on Wednesday) we would have never gotten out of there! 

We left early on Thursday evening (I trusted Holly to lay down the law with Evie's care to the night nurse - I usually stayed until the night nurse came in and I could meet her and decide whether or not I needed to stay the night) and took Gavin to Chuck E. Cheese to celebrate his sister coming home and to have one last fun night out before his life was really turned upside down. He had a blast and so did we.  We got an ok amount of sleep and got up early Friday morning, dressed all cute and went up to the hospital to get our girl.

[Thursday before we left we asked Holly if she could request somewhere that we got Lindsey on Friday because we knew she was working]

Joe and I walked in Friday morning and saw Lindsey in Evie's room. We were elated. I walked in and exclaimed how excited I was to see her. Lindsey said on her way in to work she called in to request room 1845 - Evie's room - to find out we had already requested her. She loved us as much as we loved her :)

We didn't do much on Friday, just waited to get all the final paperwork from everyone and get us our discharge instructions. When it came time for discharge I suddenly became overwhelmed with emotions. Was I going to be able to provide the same care at home? What if something happened? I was sad to leave Lindsey, she was so wonderful.  But nonetheless, we were discharged! Lindsey helped us get Evie safe and sound in her carseat and walked us out.  She waited with me while Joe pulled the truck around (we took my dad's truck because it is the biggest vehicle we could get out hands on which would provide the most safety in case of any stupid people). We talked a little, I could barely look at her because I was seriously so sad to leave her. She loaded us up, said good-bye to Evie, I hugged her and cried, she cried, Joe hugged her, and we were off.  The ice cream truck was there and Lindsey headed over to get a treat and waved as we drove by. This was it, we were on our own. 

Our third chapter was starting - our journey at home!

Lindsey filling out the last of Evie's paperwork and getting us our discharge instructions.  Me feeding Evie a bottle to tide her over until we got home!

 

Lindsey and Joe getting Evie all situated in her car bed. The NICU had them for us - it allows Evie to travel on her tummy and still be buckled in.

Ready to go home!

 

 Our empty room as we left.

Since Evie's Birth

After Evie was transported to Cardinal Glennon I was soon transferred to my recovery room at St. Mary's.  I still wasn't allowed to eat but I was able to get ice chips and boy were they good! My dad and sister left with Gavin, Joe's family left and Joe went with Evie.  My mom stayed with me at St. Mary's.  It was a long night. We didn't get to bed until after midnight!

Joe's first night at NICU was mostly uneventful.  The transport team got her to the hospital just minutes after Joe got here and they got set up in her room.  Since she was born in the evening, Dr. Elbabaa (pediatric neurosurgeon) decided to wait to do Evie's spinal closure surgery until the morning. Her surgery was scheduled for 9:30 am. Joe got very little sleep but we knew we were on the road to recovery so it didn't matter.

Early Wednesday morning, around 4:00 am my nurse came in to check on me and I told her I wanted to get up and walk (10 hours after delivery).  She said we could try it. She clearly didn't know me and my determination. I knew if i walked I could get a day pass to see Evie so I wanted to start early to make sure I could do it.  I walked about 5 feet and then the nurse finished getting my vitals.

I was able to eat breakfast so I ordered literally as soon as the kitchen opened. That was the best food I had had in days, oh wait, the only food I had in days! After that mom and I took a small nap.

I got up and walked some more around 8am and even got to go to the bathroom and get the catheter out! My dad came up and sat with us for a while. 

One of my most dear friends drove 300 miles to see me from Republic and I got to spend the whole day with her.  I knew I would be excited to see her but I didn't realize how much I needed her there. She can call my BS and catch me in a funk and call me out on it.  I needed that.

Another friend came to visit me in the hospital. Her son has Spina Bifida and was there as I was getting updates from Dr. Elbabaa during surgery so she was able to interpret a little for me.

Meanwhile, back at Cardinal Glennon, Evie had been taken back to surgery.  Dr. Elbabaa wasn't sure if he would be able to close the area on her back because it was larger than we expected. The actual lesion on her spine was the size we expected but there were issues with her skin much larger than we expected and it was in the shape of a triangle which was going to make it quite difficult to close.  This meant a plastic surgeon had to be on standby. 

I was scared out of my mind about the plastic surgeon. Dr. Elbabaa told us when we met with him at FCI that if a plastic surgeon had to get involved they would have to use slits on her back to allow her skin to be more elastic to stretch to cover the area which would increase the NICU stay from 7-10 days to more like 2 months.

About 12:30 and my cell phone rings.  It was an unknown number. I picked up.  It was Dr. Elbabaa.  He was done with surgery and everything went better than planned. There were no dead nerves which means some nerves may be weaker than others but that they could re-gain vs. being already dead and losing all function associated with those nerves. This is a HUGE win! The head ultrasound looked fine and he saw no need to do a shunt at the time of the closure surgery.

Then he dropped the bomb.

Plastic surgery was in there because he couldn't even attempt to close her spine.

I was broken. Broken hearted. Broken spirited. Just broken.

I cried, became instantly negative, forgot about all the other good news I had just received and was pretty much a mess. 

Then I was called out by the one and only and she told me to snap out of it and see the big picture.  Afterall, we didn't know what type of closure plastic surgery would end up using.

2 more hours passed and I finally got a call from Joe. He had just spoke to plastic surgery and he just saw Evie.  He said Evie looked great and was obviously still out of it.  He had a picture of her closure he wanted to send me but he wanted to make sure I was prepared for it before just sending it.

Plastic surgery was able to cut a skin flap of sorts and close the entire spot on her back by just extending what was already cut. This meant no slits and the entire incision was closed with sutures, nothing left open. Another win! This meant we wouldn't have to wait for open incisions to heal before leaving NICU. It made her scar bigger than we thought but hey, overall, great news.

By this time I had already seen my doctor who said I could get a day pass.  I had to wait to get my pain meds at 3pm and then I could leave to see my girl.  I knew I could only be gone about 4 hours max because I didn't want to miss my next pain meds and regret going. My parents had run back to the house so my mom could shower.  Nicole was left in charge of me :)

I took a shower, Nicole made fun of the ridiculously small, thin towels, making me laugh and hurt my incision but it was worth it. I needed to smile.  I took a shower, put some clothes on, although not looking the greatest, we were out the door to see my girl!

I got in the wheelchair, ran into a few doors, got in my parents car and we were off!

We got to Cardinal Glennon, I laid eyes on my miracle and stood there in awe as she slept calmly after just having her back sliced open.  The nurse came in and let us know that Evie would be able to eat in just a few minutes.  I got to feed Evie her first bottle and it was awesome. 

We took lots of pictures, decorated her room and just had a nice time being together. She was on her road to recovery and so was I.

Thursday morning I told my doctor I wanted to be released. He said I would probably be ok and decided he would let me go.  I was released by 10:00 am and then mom took me to Schnucks to get my prescriptions filled and we were at the hospital by noon (don't even get me started on the hour wait at Schnucks!).

I spent the day with Evie and have spent the day with her since. 

Since surgery:
Evie's back looks amazing. The closure is wonderful, plastic surgery really did a great job.  Every nurse and doctor that sees her says they have never seen an SB baby's back look so good or an SB baby move so much.

Evie is able to move her hips, knees, ankles and even reacts to touch on her feet.  This is huge! She can also go #1 and #2 without having to cath her, another HUGE win! A lot of these babies require cathing almost immediately. 

Her head ultraounds have been great. The ventricles are actually measuring smaller now than they were in the womb. They are 1.6 and 1.4.  Her head circumfrence is slightly larger each day, but that is measured with a measuring tape and by a different nurse each day. The minimal amount it is different could just be from different hands measuring.

She eats at least 2 ounces at each feeding. She is already on a schedule for feeding and sleeps contently between.  We did get a few smiles today!

Yesterday on Mother's Day I got to hold Evie for the first time. I attempted to nurse but she was waaay too comfy and fell right asleep once she was against me. It was ok, I just liked her being near me. 

This week Gavin is in daycare full time so Joe and I can be together at the hospital with Evie and spend some good time with her.   We usually get visitors in the evening and my parents come up every night to see her so they can just bring me home with them.

We have another head ultrasound tomorrow, hoping the ventricle sizes stay stable. At this point there is no need for a shunt and the neurosurgeons are very pleased with all of her progress.

I would just like to remind everyone of the prognosis we got at the beginning of this journey. While we still don't know the outcome we do have another piece to our puzzle and it is starkly different than the first one we got.  I do not have any other explanation other than we serve one awesome God. He healed my girl.  While she still had to have surgery, we never imagined in 10 million years we would be faced with the prognosis we have now.  The neurosurgeon found NO dead nerves, there is no need for a shunt and her back is looking great. She is healthy, gaining weight and coo'ing and smiling like any other baby. 

While our world is slightly upside down right now while trying to juggle our handsome little boy we are making it work with the amazing support of my parents.  I could never have done any of this without them. They watch Gavin almost nightly, get him to bed for us, feed him dinner, pick him up from daycare if we need it and are there to distract him so he doesn't realize mommy and daddy aren't there at that time. We never have to ask, they just do it.  While I am so eternally grateful for all of their help, I often feel guilty because I don't want it to seem like I am taking advantage of them.  I know they know just how grateful we are, it's just hard to remember that they WANT to do all of this for us.  I am not sure how I ever got so lucky to have them as parents, but I did. I hope one day my sister can have this same appreciation for them because it is more than I can explain.

Thank you, mom and dad for everything you do for me. You know I couldn't do this without you. Thank you to all of our families for stepping in and loving our little miracle and us in a very hard time for us. Thanks to all of our friends for your kind words and prayers (they worked!) Thank you NIcole (and Bill) for driving up to see me when you knew I needed you. Thank you JESUS for my amazing little girl that is perfect in every way.

I will continue to update everyone of Evie's progress, but until then I am going to sit here and watch her sleep!



The Birth of Evie Grace

Where to start?? It's been a whirlwind of a week. 

About this time one week ago today I was in the early stages of labor! Time flies!

Last Monday I stayed home from work because my back pain was unbearable and I could barely get out of bed. I had an awful nights rest and literally thought I was dying.  I have never felt pain like this before in my life. So I stayed home and was in bed pretty much all day. 

From about 11:00 am - 1:00 pm I was having regular contractions, about every 15 minutes.  They weren't getting any closer together and eventually tapered off shortly after 1.  About that time I realized I hadn't been feeling Evie regularly like the doctors told me I should. At 3:30 I decided I better call the doctor before their office closed to see what they wanted me to do. I wasn't sure since I was having contractions that would cause her to stop moving as much.  I spoke to my nurse who said Evie should have still been moving normally and she requested I report to triage to get put on the monitors to make sure everything was going ok.

Joe was out picking up Gavin from daycare. As soon as he got home we left Gavin with my dad and Joe and I left for the hospital. My mom met us up there. We got to the hospital around 5pm on Monday night.  I hadn't eaten since 2pm, I was hungry for dinner but thought we would only be there a few hours and I would grab something on the way home. I was wrong. WAY WRONG!

We waited for a room in triage. Waited and waited. They were full.  At 6:30 we finally got a room. They put me on monitors and within minutes you could see my contractions. I was still having them.  The nurse chalked it up to "uterus irritability" - what does that mean anyways? They told me the same thing with Gavin! So we sat there, me on the most uncomfortable "bed" you have ever been on in your life, I promise. I knew my doctor, Dr. Vlastos, was at the hospital and I was waiting to see him in triage to see what he thought. 

My contractions started getting closer and closer together. Like 2 -3 minutes apart. Finally after seeing a "normal OB" (non high risk) they called in another high risk doctor to see me because this doctor just could not understand why my doctors didn't want me going in to labor. I felt like I needed a power point to explain what spina bifida was and then maybe she would understand.  So, I see the high risk doctor and within minutes she was on the phone with Dr. V who said I was going to be admitted for 24 hours of observation. We didn't get this news until 11:30pm.  My mom left at that point to get home and get some rest as she would be staying downstairs with Gavin since we wouldn't be home. 

By 12:30 am we were finally admitted to the hospital. We didn't get transferred to my actual room until 1:30 and they were getting my vitals until about 2:30 am.  At this point my contractions are lasting 45 seconds and are 1-1.5 minutes apart.  The problem was that my cervix was dilating (I told them about Gavin a million times but the nurses didn't seem to care - I never dilated with Gavin either!). That night I got 3 hours of sleep, if I round up!

My contractions lasted all through the night. They spaced back out to every 3 minutes or so but they were still there. 

The nurses were convinced I wouldn't be delivering so they ordered me a regular diet and I was able to order an awesome breakfast. An omlet made to order, hashbrowns, a banana and apple juice. I was so stinking excited to eat! I was starving!

One of my doctor's Residents came in and checked me at 7:00am on Tuesday morning and said I still wasn't progressing and that Dr. Vlastos would be coming by to see me first thing in the morning.

Dr. Vlastos came in at 8:00 am and said he wanted to watch me until 10 and then at 10 he would make the decision on whether we would deliver Evie or try and stop the labor to make it to my c-section date. He also said that just in case I wasn't allowed to eat. So much for that awesome breakfast I just ordered. He took me off of everything, I wasn't even allowed ice chips. Man, was I hungry!

10:00 came and went.  Around 11:00ish Dr. V came in and said he wanted to wait a little longer to see what my body would do.  He came back to check on me around 12:00 and said he was on his way to a meeting and would definitely make the decision around 1.

12:45pm, the anesthesiologist came in and asked if I had talked to Dr. Vlastos. I said I hadn't but that since he was there that must have meant we were going. He said not necisarily and he just wanted to get my paperwork done. I was bummed. Not because I wasn't having her but because we still didn't know what was going on.  We signed the paperwork, took off all my jewelry and waited some more.

1:15pm - Dr. V came in and said he wanted to check me again. I was 1cm dilated and my cervix was "very soft" (he also referred to my cervix as "stingy" - haha I tried to tell them!). He said my contractions plus dilation plus soft cervix equals we are having a baby today. My heart sank. While I wanted an answer on what we were doing I wasn't sure I was prepared to get answers I had been waiting so long for.

He was delivering a baby at 1:30 via c-section and I would be right after that. 3pm rolled around and it was my time. Just when we opened the door my sister in law and Joe see nurses running, literally running towards the OR and a girl in street clothes with oxygen on getting wheeled down.  My nurse ran in to tell us there was an emergency and we were getting bumped. I wasn't mad at all. If I was the emergency I would want the non-emergency to be bumped as well. I was also relieved to buy more time to get myself together.

5:30 came (well over 24 hours since I have eaten!) and my nurse came in to start prepping me. I had to take a shower with special soap, drink a nasty drink, put my hair up, you know, the whole 9 yards. 

6:00 - I walked back to the OR.  I thought since I wasn't an emergency everything would be calm in there. I was wrong, I think those OR nurses only know who to be in a rush.  So I sat on the tiny table, now shaking and scared out of my mind. I am not sure why I got so nervous, ok I do know, I was terrified of answers.  My resident doctor came and held my hand and told me it was all ok and waited for me to get my spinal block.  He was awesome, seriously awesome.  I laid on the little bed and got my tingly feeling right away. Blue curtain went up, Joe was in there, it was time.

Time to meet my baby.

Dr. Vlastos was within an ears shot the entire time. I got to hear all things no one ever wants to hear. Things like "I'm not sure what that is, we are about to find out" and "We'll find the baby here soon".  I started freaking out and told Joe to start talking to me and to not stop. So he obliged and we talked about the weirdest things, even the weather, ha!

Dr. V heard me worrying and peeked his head over the blue curtain and said they were having a hard time getting to her because of all of my scar tissue from Gavin's c-section.  Not too long after that, Joe was told to stand up and watch his daughter being born.

He saw everything and I mean everything and watched as they pulled our sweet Evie Grace from the womb.  She came out screaming like crazy. Best noise ever.

She had swallowed meconium so they were getting a good scution on her.  The neonatologist swooped her up right away to get her back all covered to avoid infection. Joe followed back to a glass enclosed room as they weighed her and got her in her little NICU bed. I was able to see her for a quick second while still in the operating room. I cried and cried. She looked just like Gavin.

I talked to Dr. Vlastos and the neonatologist who said she was perfectly healthy and "normal" all except her back.  That made me a little relieved. Since she was only 37 weeks 1 day I was concerned about her breathing but she didn't have a problem.

While I was finishing up in surgery the doctors wheeled Evie by my room so the family could get a quick look and then I went back to my room for recovery. 

About a half hour into my recovery the transport team arrived to my room so that I could see her one more time before she was taken to Cardinal Glennon.  The entire family was in there (not how I wanted it but we didn't have much time).  They wheeled her transport bed around to the side of my bed and unzipped it. I held her hand. We took a million pictures and then it was time for her to go. I cried hysterically. Joe left which made Gavin cry which made me cry that Gavin was crying but Grandpa was there and made everything all better. 

I knew this is how it would all happen, that she would be taken from me and Joe would go with her but I was heartbroken, no amount of time can prepare you for that. I didn't even feel like her mom. There I was in the hospital with no baby belly and no baby.  Where was my baby? I felt awful. I just wanted her.

She was healthy. 8lbs 3 oz and 20 1/2 inches long.  That was all that mattered.

The next chapter of our story was starting and it would start at Cardinal Glennon NICU.


(Please note I do not have pictures of her back uploaded.  The Spina Bifida will not define this sweet girl.  I do not find those pictures to be of importance to most people. Please enjoy the pictures of our sweet girl)