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!