How God Shows His Love

Back from NJ

2015-12-10T19:17:00.000-08:00

Saturday night we left for NJ. We made the looooooong drive through the night and made it around lunch time Sunday. We had a little time to kill so we drove around Summit for a little while to find the hospital and to see what was around. We ended up coming across a really neat live nativity. After that we called it a night because we were all pretty exhausted.

The next morning Leila had her pre-op appointment with Dr. Nuzzo. It was the first appointment of the day so we had the rest of the day to play. We realized we were less than 30 minutes from Liberty State Park where we could catch the ferry to see Ellis Island and the Statue of Liberty so that's what we did since none of us had ever seen it in person.

Tuesday morning we had to be at the hospital at 7:30 for 9:30 surgery. They let me go back with Leila to the OR and stay with her till she was asleep which was nice because she was able to stay calm. The doctor came out and told us everything went well and then the nurse came to take us back to see her. She was really irritable (who isn't when coming off anesthesia). It took a little while and quite a few medications to get her calmed down and resting. After a while she started to come out of it and wanted to eat and drink. They didn't put casts on her. They let us use her AFOs as a cast so that was nice. Her incisions really are tiny. They gave her good medicines that pretty much just knocked her out so as soon as we got back to the hotel she was out for the night.

Friday morning we got up really early and hit the road again. We only stopped one time for lunch and gas and pushed through and got back to Nashville around 6:30. Leila was a trooper. I stayed on top of her pain medicines to make sure she was comfortable. She only had one incident where she was having a muscle spasm which they say is pretty common right after a surgery like this but I gave her medicine and it almost immediately went away.

She has still been pretty out of it because of exhaustion and medicines but we are starting to be able to get her off of some of the medications. We can already tell a difference in that her legs feel much better and she can straighten them out no problem now. We can also tell a difference in her arms. Last night she was reaching really high to hit her cousin in the nose. She thought that was hilarious. We can also tell a little difference in her core. She will have to relearn some things and get used to her new body but I think this was the right decision for her and I can't wait to see the full effect when she's over the after affects of surgery!

Prayers as we go to New Jersey

2015-11-15T07:23:00.000-08:00

Several months ago, I kept seeing a procedure discussed on a CP page that I follow on Facebook. It sounded like something that would be good for Leila so I started researching. As of right now there are only two doctors in the whole US who do this procedure. One is in Texas and one (the one who started the procedure) is in New Jersey. It's called SPML (Selective Percutaneous Myofascial Lengthening).

As the name suggests it is a lengthening procedure that will help the muscles/tendons work more normally. We have thought long and hard and prayed about this and we feel like it is something we need to do for Leila. Her developmental neurologist at Vandy recommended the doctor in New Jersey. I made the calls, sent the paperwork and videos, and got the process started. I got the email back saying that Leila would be a good candidate. So, here we are! We are going to New Jersey in just less than 3 weeks!

This surgery could be life changing for Leila! There a lot of reasons we are choosing this procedure over other procedures that can be done here. TRUST ME, I have done the research and we feel this is the best option for Leila. We are scared, nervous, anxious, excited...just about every emotion you can imagine. This is a big undertaking. We hope you will pray for us to have safe travels and that this procedure will be completely beneficial to Leila.

If you would like to learn more about the procedure and why we would choose to go all the way to New Jersey over having one of the traditional procedures done here you can visit Dr. Nuzzo's website. There is a TON of information there. Here is a link to a FAQ page about the procedure. http://www.pediatric-orthopedics.com/Treatments/Muscle_Surgery/Perc_Lengthening/FAQ-_Percs/faq-_percs.html

I'm also open to questions. Feel free to ask!

A Way To Donate

2014-04-10T19:01:00.000-07:00

As most of you know Leila was diagnosed with cerebral palsy just before the twins' first birthday. Immediately she started intensive therapy. She sees her speech therapist, occupational therapist, and physical therapist every week. She also attends a developmental preschool two days a week. We also continue to check in with her eye doctor, neurologist, as well as other specialists.

Along with going to therapy, Leila needs special equipment to use at home. Everything in the special needs community is very expensive and we get very little help. So, we have opened a PayPal account in Leila's name that is directly linked to her bank account. If anyone feels led to donate we would be forever grateful for the help!

Here are a few examples of things we are needing right now...

A gait trainer. Her therapist wants her to have a Kid Walk (pictured below). This will aid her in learning how to walk. Cost: around $2500.

The GoTo seat by Firefly. This is a lightweight seat that would help support her in any kind of seat. I could actually take the twins to the store with me by myself because Leila could sit in the cart. She could sit fully supported in a restaurant high chair (or any other chair) among MANY other day to day uses. This would help our lives in so many ways.
Cost: $265

The Upsee Harness. This would allow Leila to be strapped to an adult and walk along with us. This would also help her learn to walk. Cost: $489.

We're just throwing this out there in case anyone feels led to donate. We would be forever grateful for any and all donations to help get our little girl the equipment she needs to make her life a little easier. If you would like you can just click the donate button below. Also, feel free to share the link!

Thank you for taking the time to read and consider!

Answered Prayers

2013-10-04T20:28:00.000-07:00

I wanted to share what God has done for us this week.

The beginning of the week didn't start off too well. For starters Leila has had pretty bad separation anxiety since she started preschool. To the point that she has thrown up almost every time I have left her. It's been hard. Last Thursday she lost it all over me and the car before she even made it inside.

Also, Brian is a Federal employee. The government is shut down and there's no telling when it will reopen...The same day of the government shutdown we found out that TEIS would not cover a very expensive piece of equipment that Leila needs. So, we tried not to stress and just started praying for the Lord to provide.

I started trying to figure out what our options were. I had heard about UCP in Nashville from a couple people so I decided to give them a call. They have an equipment exchange program. From what I was told it sounded like they probably wouldn't have exactly what we needed but would probably have something that might work.

So, yesterday I dropped Leila off in Murfreesboro at school and for the first time she didn't cry when the teacher took her from me. First prayer answered! I was already excited from that and Logan and I drove on to Nashville. The lady at UCP showed me the equipment she had put on hold for us and I was about to send a text to Leila's therapist to see if it might work when I spotted the EXACT piece of equipment we needed. She also insisted that we try a stroller they had. So here I am with around $8000 (yes you read that right) worth of equipment in my car to use with Leila that I got completely free and we can use it for as long as she needs it!

To say I had an AMAZING day is an understatement. God answered two big requests all within about an hour and a half.

God answers prayer and he will always provide for His children. It may not always be the way we think it will happen or how we think it should happen but it will happen in His perfect timing.

Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge Him and He shall direct thy paths.

Happy 18 months Logan and Leila!

2013-09-03T18:59:00.000-07:00

Tomorrow marks 18 months since the best and worst day of our lives. The babies have come so far and we are so very proud of the both of them!

Logan is our little comedian who thinks he's the boss of the house.

Leila is our little princess. Just a sweetheart who will cry if her brother gets in trouble.

Leila is very much a Momma's girl (which is ok by me). We know she needs a little separation from me so we've been trying to leave her in the church nursery during service and Sunday School which she has done fairly well with. We've also been trying for a little bit now to get her into a preschool program in Murfreesboro. It wasn't without some pushing but we were finally able start this week. The hours are kind of like a Mother's Day Out but although she is behind where she should be developmentally because of her CP, at this center she is in a class with her peers. Her teacher is WONDERFUL. They get the benefit of reading the notes that her PT and OT make each week so they can work on some of those things there as well. It's such a blessing to be able to take her and we're very excited to have this opportunity!

Today was her first day and I discovered something. Although I've worked in childcare before and I know what it's like to be on the teacher side of pulling a kid away from their parent, I had no clue what being on the parent side would be like. I'm not going to lie, I balled. Did I mention how awesome her teacher is?! Knowing the state I was in having to leave her there she texted me pictures so I could see she was ok. When I picked her up her teacher told me she did cry some but it was a good first day so that was encouraging.

Logan could attend as well but we have decided not to send him. We decided it would be good for him and I to get to spend some time, just the two of us while Leila is at preschool. Today we went in Hobby Lobby and I let him get down and walk himself. He thought that was great! He started trying to run from me and thought it was just hilarious! We then went to Target and he got to play with the toys there. He threw a good little fit when I made him leave :(. His favorite toy he found was two little shopping carts. He wanted to push them all over the store.

Overall, today was a good day and I can't imagine life without these two blessings (no matter how hard their grand entry into this world was!). What a journey it's been but HAPPY 18 MONTHS LOGAN AND LEILA! We can't believe it's already been 18 months!

This is how I had to leave Leila today. See why it was so hard?!

Logan's favorite toys in Target today.

talking on the "phone" (remote control )

Leila sitting up all by herself!!!!

See the pony in the corner? Well, since we got those at their birthday party, Logan tries to ride us all :)

Crazy hair!

He won't ride in the seat. This is how he likes to ride in the buggy so he can play with everything we put in there :)

One Year Anniversary

2013-06-25T20:17:00.001-07:00

Today is our one year anniversary of bringing both our babies home! One year ago today Brian and I had no idea what we were in for. We were running around the Ronald McDonald House like chickens with our heads cut off trying to gather all our stuff that we had accumulated over the four months of living there because we were FINALLY given the news that we could take our precious babies HOME! Logan had already been with us at the house for two weeks but they were letting Leila go as well! We were so excited but also scared at the thought of being all on our own to take care of two babies, one having to go home on oxygen and meds.

This year has flown by! Can time just slow down a little? Looking back I can't believe it's already been a year! They've grown so much and have come so far!

We had their 15 month checkups a couple weeks ago. They are both finally on the growth charts for their adjusted age! Leila weighed 16.4 lbs and 28.5 in long. Logan weighed 18 lbs and 29 in long. We were given the ok to come off of formula and start on whole milk. My babies are growing up :)

Here's a quick look back...

The day Logan got to go home!

Daddy with both babies then...

and now!

Then...

This was in March. Now their feet hang out!

6 month pic

9 month pic

12 month pic

Moving Along

2013-06-04T14:07:00.000-07:00

What a crazy month it's been! We decided it was time for us to leave Tullahoma behind and find a house that is a little bigger for our family that is now a little bigger. We also wanted to be a little closer to our families. We got an offer on our house after just 9 days of being on the market! Moving is hard anyway, but as you can imagine it feels almost impossible trying to do it with two babies. We close on our new home this week and we can't wait to get settled again!

In the midst of the chaos Logan has decided he is ready to start walking. He took his first steps not long ago. Thankfully it was in front of Brian and I both. We both wanted to see that and we got to. What a fun moment!

He's also getting to be a little booger :). He has started smacking the spoon away when I try to feed him and he throws fits when I try to change him. He now knows how to tell you he wants more food by waving his hand towards himself and/or saying num num. He knows what num num is! That boy will eat till he makes himself sick!

Leila is doing wonderfully! She thrilled her therapists this week by crawling on her own alternating her arms legs just like she should. She's my mini-me and my constant little sidekick and I wouldn't have it any other way! She continues to amaze us!

They had their first experience in a swimming pool yesterday. The water was cold and it didn't go well...Oh well, it was a fun first anyways.

We can't have a blog post without some pics and videos so here ya go :)

The basket was laying on the chair and Logan decided to pull it down. This was the result...Mean Momma
found it funny and took pictures before helping him get out :)

My mini-me!

He likes to rearrange furniture :)

and randomly play peek-a-boo!

First time going swimming!

Such a contagious laugh!

Walking! Here's a few steps...

Never Lose Hope

2013-04-11T18:21:00.000-07:00

Romans 5:3-4

New International Version (NIV)

³Not only so, but we^[a] also glory in our sufferings, because we know that suffering produces perseverance;⁴perseverance, character; and character, hope.

I saw this verse on another parent's page and it really spoke to me. It really makes me think of my Leila and everything she's had to endure. It makes me think of everything we've had to endure as a family over the past year. Being honest, sometimes it's been hard to keep faith but we've tried. We still believe God has a purpose in everything and maybe one day we will know what that purpose is. This verse has really stuck with me. It's becoming one of my life verses.

Good news from Leila's therapists! When we first started they recommended Leila getting therapy twice a week once we were able to get her into a place closer to home (we're driving an hour for therapy right now but it's soo worth it! We love her OT and PT!). They said this week she is making progress so quickly that once a week is fine. They can't believe she's only had 6 weeks of therapy because she's already so different than when we started. I am more than proud of my little girl!

Sickness season is almost OVER! Finally! The twins had their last RSV shot last week. The season is over at the end of this month and then we can finally start getting the babies out of the house more and around other people. They need it too. I love them more than life itself but they are both getting pretty clingy. Leila has always been really bad about it but Logan is starting too. It will be really good for them to be around others.

We are also LOVING the pretty weather. We've gotten to go to the park and walk a couple times and got out in the back yard to play yesterday morning. Logan doesn't quite know about the grass yet :).

Today was Brian's birthday. We had a little celebration with a "Happy Birthday" banner, homemade salsa, fajitas, and chocolate mint cupcakes. One more year to the big 30...I can't tease him too much about it though because I'm only a few months behind him and I think it's getting to me more than him...It just doesn't feel right...

and mine!

If you Look closely you can see my first tooth!

Pulling out all the wipes!

Daddy teaching us how to play the "drums"!

Fun in the sun!

First time playing with a leaf.

I'm too sexy for my diaper!

Not happy after her shot :(

Changing the tv channel.

After two hours of therapy she is wiped out!

Easter

2013-03-31T18:46:00.001-07:00

Mark 16:1-6
When the Sabbath was over, Mary Magdalene, Mary the mother of James, and Salome bought spices so that they might go to anoint Jesus' body. Very early on the first day of the week, just after sunrise, they were on their way to the tomb and they asked each other, "Who will roll the stone away from the entrance of the tomb?"

But when they looked up, they saw that the stone, which was very large, had been rolled away. As they entered the tomb, they saw a young man dressed in a white robe sitting on the right side, and they were alarmed.

"Don't be alarmed," he said. "You are looking for Jesus the Nazarene, who was crucified. He has risen! He is not here.

Easter is a fun holiday but let's never forget the real reason. HE HAS RISEN!

I keep trying to say this is the twins' first Easter. It's not. Last year was their first. Last year at Easter the twins were just a few weeks old. They were both in incubators fighting for their lives. Leila was so sick. We really couldn't think of anything else but those babies and were just trying to get through each day minute by minute. I guess that's why I keep trying to say this is their first.

I'm not sure if we'll do the whole Easter Bunny thing or not but we did go get a picture with him this year for the fun of it. The best picture we could get is below. This pic was taken right before Leila started screaming her lungs out at him :)

Today, the first Easter we could celebrate as a family of four, was a good day. The babies received their first Easter baskets with lots of goodies including some candy to try. My parents were able to come out and have Easter dinner with us.

Logan went to the store with me Saturday night. He kept his ears on the whole time :)

I kept trying to get a pic of Leila with her goodies but
she was too focused on getting into it...

My bunnies :)

She LOVED her sucker!

Playing with Mama

Holding herself up! Yay!

My big girl!

Can you hear me now?

2013-03-27T17:24:00.000-07:00

Trust in the Lord with all thine heart and lean not unto thine own understanding. In all thy ways acknowledge HIM and HE shall direct thy paths. Proverbs 3:5-6

Sometimes it's really hard to understand why things happen in our lives. We don't have the answers. We don't know what the future holds. The not knowing is hard for me. One thing I do know however is how thankful I am that I still have both my babies. I can still hold my babies and play with them. I can tell them I love them a hundred times a day. We still have struggles ahead but we can deal with that. Some people aren't that fortunate. We don't always know the why but we have to have faith and trust in the ONE who does have the answers.

Please keep those who still have babies fighting in the NICU, whatever situation they are in, in your prayers. There are so many fighting not only prematurity but also rare diseases and such. Seeing their stories every day makes me so thankful that even though we had to go through what we did and even though we still have some fighting to do, I still have my babies to hold.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Because of the twins prematurity we had to go have their hearing checked again. Apparently, almost everything they had to have done in the NICU can affect their hearing. All I could think of was that cell phone commercial..."Can you hear me now? Can you hear me now?"

I mean, how in the world do you check a baby's hearing? If you're wondering like I was, there are two different ways. I'm not sure how they did it in the NICU because I wasn't there for it but today the audiologist used two different machines. The first was a machine that had ear buds attached to it. She put the ear buds in the baby's ears one at a time to measure how the inner ear reacted to sounds. The second machine looked a lot like the first but measured how the eardrum reacted to the sounds. It was pretty simple but she had to run the tests several times. The babies had to be completely still to get good results. Do you know how hard that task is?!?

Good news. BOTH babies passed their hearing tests with flying colors! Yay babies! Thankfully that's not something we have to worry about.

Leila is continuing to make progress in her therapy. Her therapists seem excited about how fast she is progressing. My girl is rockin' it!

We are thankful for every ounce of progress and every good result!

Thank you for your continued prayers and love.

As always, here's some pics.

Look at that belly!!!

Daddy/ daughter time.

Feeding myself!

Daddy/ son time.

Somehow he got his arm out by himself while I was
getting their food ready...

My big girl in big girl clothes today to go to the doctor.

These Are a Few of Our Favorite Things

2013-03-22T16:13:00.001-07:00

Nothing really new has happened in the past couple days. I just thought it would be fun to post a few pics and tell you about some of the twins favorite things.

~Leila~

Food
She loves any and all fruit and sweets. This girl is definitely my child! She LOVES anything sweet! She's pretty picky about vegetables. She HATES peas and will choke and gag on them. She will however eat anything if it comes off my plate...

Toys:
monkey rattle, her Oball, BeeBall, IPhone

Leila and her Oball

Least Favorite Item of Clothing:
Headbands. She screams every time I put one on her. She will however let me put bows in her hair.

Favorite Thing to Do
Sit in her Mommy's lap. She's my little sidekick. Always. Her other favorite is playtime at night before her night time bottle before bed. She loves for us to tickle her.

Random:
After her nightly bath she gets really wound up. She makes a motorboat sound. We can't get her to do it any other time besides right after her bath...

This is how wound up she gets at night....

~Logan~

Food
He likes just about anything. He has even tried lemon and didn't even make a face. Last night Brian and were eating cookies. He made his way over to us, grabbed a cookie off the plate, and had a big bite in his mouth quicker than we could move to stop him.

Toys
Anything other than toys. He will play with boxes, papers, or anything else other than toys. He gets bored really quickly.

Least Favorite Item of Clothing
Socks. He will not keep them on his feet. Always pulls them off.

Favorite Thing to Do
Pull up on everything. His favorite place is under the kitchen table. He fits perfectly under it.

Random
Logan loves theme songs, especially Smallville and Big Bang Theory. Whenever he hears one of these he stops whatever he's doing to look at the t.v. He gets really excited and even fist pumps. We have no clue where he got that. It's one of those things he just completely started doing on his own. Check out this video and you'll see what I mean :)

Ready for a nap...

Ready for the doctor.

"Helping" with laundry again.

Mom had fun with my hair while I was asleep...

Update from Eye Specialist

2013-03-19T19:16:00.002-07:00

Leila is coming along in her therapy. Each week we go they seem excited by her progress. We work really hard at therapy and at home to ensure she has the best chance possible.

Last Thursday we went back to the eye specialist. When Leila gets tired her eyes still wander a bit. By our last conversation I was expecting glasses. Instead, he wants to do surgery to strengthen the eye muscles. If at all possible we would like to avoid our little girl going through another surgery. Yesterday, I spoke to her therapists to see if there was anything we could do therapy wise to work on strengthening the eye muscles without surgery. The therapists told me they do not like this surgery and why. They feel it is unnecessary and have seen cases where the surgery does more harm than good. They said there are things to do besides surgery. Now, Brian and I need prayers. We have another hard decision to make. We pray there will be enough improvement by the time we see the eye doctor again that he won't want to do surgery anymore.

I think we need a padded house for Logan! He is everywhere and into everything. He has no fear and tries to climb up on and just let go of things. The poor guy falls A LOT! He has his first tooth pushing through. He's been a pretty cranky little thing the last couple of days. Hopefully it comes on through quickly :)

If you haven't seen these yet, here are a few of the twins 12 month pics.

and some random ones...

Long Time No Posts...

2013-03-11T19:28:00.003-07:00

We are going to try to get back into the habit of updating the blog. We know it's a been a while. As you can imagine it's hard to get a chance to sit down these days.

The last we posted was after Leila's surgery was scheduled. Honestly, Brian and I were having a really hard time with it. We prayed for months about the fluid on her brain. When you pray earnestly about something for months and then you don't get the answer you want it's hard not to question God. We wanted to know why He wasn't healing our little girl when we both really felt like the situation was going to go the other way.

It's incredibly hard to watch your baby go in for surgery after surgery and to know this one needed to be done but having it done also meant the possibility of revisions (more surgeries) that could happen at any point all throughout her life.

Anyway, Leila had her shunt placed on October 10th and praise the Lord we are at the point where we will only have to check in with her neurosurgeon once a year (unless we have concerns that something is wrong). She has done very well with it.

This winter we have definitely not been out of the house much at all. All of the twin's doctors warned us multiple times of the danger of them getting sick so we have done our best to keep them healthy. So far we've only had to fight off a couple colds all winter long. We want really bad to get back into church. Hopefully once flu and RSV season over we can do that.

Now for a little update on what they've been doing lately...

Logan has been doing an army crawl for a while now. Just yesterday he started crawling the right way :). He's getting pretty quick and follows me around the house like a little puppy dog. He pulls up on anything he possibly can. He's into everything. He's so smart. He even knows how to use the tv remote. He babbles all the time. He's Mr. Independent and thinks if you can do something, so can he. He's definitely my wild child.

Leila is very smart and definitely knows how to get what she wants. She's the princess. She also babbles all the time. She's behind on her motor skills so about a month ago we saw a developmental doctor at Vandy. This doctor diagnosed her with CP but said she sees a lot of potential. Leila tries so hard and wants to be doing things right beside her brother. We've started therapy seeing PT and OT every week and I work with her at home every day as well. Her therapists have high hopes for her (so do we!) and are impressed by how quickly she is progressing. I'm so proud of her. She works so hard. We know she's going to great things :).

A major milestone was celebrating their FIRST BIRTHDAY!!! So many people to thank in helping us get to this day! Thank you to the angels who came by helicopter the day they were born to help save their little lives. Thank you to the doctors and nurses and all our family and the few friends who have helped us through it all from day one to the present! We love you and are thankful for you all!

my pretty boy

"helping" mommy with laundry

Testing out daddy's guitar

brother/ sister love

having fun playing together

Happy Birthday Leila and Logan! (party to come in June)

the aftermath :)

Another Surgery

2012-09-27T05:29:00.001-07:00

Last week we went to the new neurosurgeon at Vandy. Friday afternoon he called and said he had finally had the chance to really sit down and take a good look at all of Leila's scans. In his opinion, her ventricles have not been stable but have been getting slightly worse. Not what we wanted to hear and not a great way to start a weekend... Monday we got her surgery scheduled and by Tuesday she came down sick....

We have tried our very best to keep these babies healthy. We clean constantly, wash our hands constantly, and have Germ-X all around the house. The only place we've taken them besides doctors appointments is the park to get out and get some fresh air a few times. So, it's very frustrating that she is sick and there's not a whole lot you can do for a little one her age.

Please pray that she gets well soon. We have her surgery scheduled in a couple weeks so we need her well so she can have the surgery that she needs.

Sweet ZZZZZZZZZZZZZZ's

2012-09-14T07:15:00.000-07:00

Everyone says that when babies are ready to eat more they will let you know. Boy do they! Both babies had been eating the same amount for several weeks and we were starting to wonder when they would want more. For the past couple of days they seem like we just can't get them filled up! They have been eating like crazy sending us back to the kitchen for more each feeding.

And, with eating more they have been sleeping longer : ) Wednesday morning they made it till 5 before waking up, yesterday they made it all the way till 6 (which is when we get up anyway), and today they made it until 6:30! So thankful that both babies are starting to sleep through the night. I think Leila would have for a while now but we were always afraid we would be up twice if we let her sleep and just got Logan up. We had to make a trip to Chattanooga yesterday and I got to make the drive on more than 3 hours sleep which felt REALLY good! (We are done with the pulmonologist. Another specialist crossed off the list! :))

We're also getting close to being able to try something other than formula. This week we have been able to start giving them a little juice (not sure either one of them are thrilled with it yet) and soon we will be able to start trying baby oatmeal. I can't wait. When we're at the dinner table Leila will watch every bite go from my plate to my mouth...I think that big girl is ready for some real food : )

So thankful that my babies are continuing to get bigger and stronger with each passing day but kind of sad that they are growing so fast...

P.S. Please keep us in your prayers as we will be seeing the new neurosurgeon on Monday. We are just praying for some answers...


This past weekend we decided to get out and get some fresh air. This was our first family outing to something other than a doctors appointment. This is just about all the babies did.

Isn't he handsome?! Our first family trip to the park.

Leila playing with her toy.

Logan with his toy. Thanks Nanna!

Update

2012-09-05T07:11:00.000-07:00

The last couple of weeks have brought more questions than answers. We've been praying for answers regarding Leila and whether or not a shunt is needed.

Leila's ventricles are definitely larger than they should be. The good news is that her ventricles have not gotten any larger since we left the hospital. She is also not displaying any of the warning signs that her enlarged ventricles are causing her problems. The thing that worries our now former neurosurgeon is her head size. But, here are some things to consider...Leila has doubled her weight since we left the hospital around 10 weeks ago. She has grown so fast! Is he taking into consideration that her length and weight have also crossed percentiles? No. Does he know if her head size is because of her ventricles or because she is growing so much so fast? No. Has he been keeping an accurate record of her head circumference measurements? No. Is he sure that she needs a shunt? No. Is it urgent? No. But if it was up to him she would already have it.

Anyway, all that to say that at the last appointment with our neurosurgeon things just weren't adding up. He couldn't say for sure that a shunt is what she needs but he wanted to do the surgery that week. He also did something that I won't rehash here but it made us not trust him at all. We decided since he said it definitely wasn't urgent that we would go for a second opinion. Soon, we will see a neurosurgeon at Vanderbilt Children's Hospital and hopefully have the answers we need. I know we've been praying about this for months but please continue to lift Leila and us up regarding this situation.
______________________________________________________________________________

Both babies are doing GREAT! All I have to do is give them a hand to push their feet against and they'll crawl across the floor. They are both holding their heads up a lot better. Both can raise all the way up to their elbows when on their bellies. They are also both so inquisitive. They study people's faces and the things around them. They seem so fascinated by lights, sounds, and...the t.v....

Logan is a little character. He is the comic relief of the family. I'm not sure where he gets his personality. He's always smiling and wanting to play. He likes to try to get out of having to take all of his bottle by stopping in the middle and smiling and playing. I have to admit, sometimes it works because he is just so darn cute when he does it...He is also starting to try and grab things and he tries to mimic you when you stick your tongue out at him or make a facial expression.

Leila is still our little princess. She is also starting to smile at us more and want to play more. I LOVE seeing them smile! They both amaze me every single day.

Crabby Pants

Sweet little feet with Momma's long toes :)

Sweet boy

Sweet girl

A little blurry but it gives you an idea of how good she's pushing up!

So proud of her!

We're in trouble...This is how I put Logan to bed last night...

And this is how I found him this morning! He can officially roll all the way over!

Baby I'm Amazed By You :)

2012-08-20T19:29:00.000-07:00

These two continue to amaze me!

This past Tuesday Logan had surgery to repair his hernia and to get circumcised. It broke this momma's heart but he did wonderful and showed once again what a strong little man he is. He had to be put under anesthesia so he was pretty out of it and fussy during the day Tuesday but by Tuesday night he was already almost back to himself. He never once even acted like it bothered him for me to change his diaper. He also got to sleep in the biggest crib I have ever seen. It was about six feet long and about 3.5 feet wide. Our nurse told me that she has come in before and seen the patient sleeping in their car seat and the parent sleeping in the bed. That's how big this crib was.

Logan and I stayed at the hospital that night and Daddy and Leila stayed at home. I have to say that I hated being away from them but Daddy did an awesome job with his little girl.

We pray that was the last hurdle for Logan.

We go back to the neurosurgeon for Leila again this week. He's still not sure whether he feels like she will need a shunt or not so until that decision is made we will see him every other week. Please continue to pray with us about this issue. We've been praying about this for months and still don't have an answer. That gets tough sometimes because as humans we want an answer now. We want God to answer our prayers the way we want Him to and right away. But that's not how He works sometimes. Sometimes the answer is wait/ not right now and sometimes the answer is no. We're trying to remember that no matter what the answer is He has a purpose for it. He has big plans for my little girl I just know it. But as we struggle please remember her as well as us in your prayers.

We also go back to the eye doctor for Leila this week. This should be the last. Thank the Lord for this and many other answered prayers.

Our hurdles are getting less and we praise the one true God for His amazing blessings!

Got to have some naked bath photos for the future :)

I love her hair!

Play time

Watching Saturday morning cartoons together :)

JUST PROTECTING THEM

2012-08-12T11:37:00.001-07:00

On October 10, 2011 our world changed forever. From that day we knew our lives would never be the same. We were going to be responsible for another life. Little did we know that we would be responsible for two. From that day on with the Lord's help we wanted to make the very best decisions for our little ones that we possibly could. We knew this task wouldn't always be easy and it definitely hasn't been so far.

Our babies are not "normal" babies. Our babies were born as micro-preemies. With that comes lots of issues that other parents and babies don't have to face. I'm not going to lie...I feel a bit jipped that I didn't get to experience my whole pregnancy. More importantly though, my babies did not get that very important third trimester before they were forced to try and face this world. Nothing about them was ready. My body should have still been doing everything for them. It was definitely a tough sixteen week stay at the hospital to get them ready to come home.

Yes, my babies are well enough to be at home now. That still doesn't mean they are as well as full-term babies. They still don't have much of an immune system and even a common cold could send them straight back to the hospital. We are desperately trying to keep them healthy. Call me crazy but after sixteen weeks of spending every single day in the hospital, I don't want to go back.

Brian and I would LOVE to get our babies out more and show them off, especially to all those who have diligently prayed for them and have supported us. But, that's not what is best for them right now. Right now, and for a while, it's best for them to be at home and around as few people as possible. This doesn't mean that we mind when people come and visit and meet the babies. We don't as long as they aren't sick, or have recently been sick, or have been around anyone who has been sick. Our main goal right now is to protect our babies and as the months grow colder it will be that much more important.

It may still be a while before we feel it's ok to get them out and about to things like church or family get togethers even. Please be patient with us and understand that we're not trying to keep them from anyone. We are more thankful for all who have prayed for us and loved on us along the way than any of you will ever know and as soon as we feel that our babies are ready, we WILL be showing them off!

Life as a baby is a tough one...

Can we say WIDE awake?!

Pics

2012-08-09T08:42:00.000-07:00

This week has been pretty uneventful. But, after all my babies have been through I am thankful for uneventful. I just wanted to share a few more pics. I'm a bit camera happy these days but who can blame me?!

Our batteries ran out in one of the bouncy seats. We were sharing the vibration and I was rocking them both. Not sure what we would do without these : )

Courtney was wonderful enough to ride to Franklin with us to the eye doctor. I was signing them in and turned around to this. She's getting good! (and getting some good practice in!)

So handsome

Showing off the headband Mommy made me.

Holding Frogger

We went shopping in a pretty dress.

Play time

They can push up so good!

Having fun

We play hard!

After 45 minutes of playing he was out!


Precious little chubby fingers : )

MANY BLESSINGS

2012-08-04T19:14:00.000-07:00

I know there hasn't been a real update lately and we are sorry. This has been a very busy but blessed month home. We have had so many doctors appointments, many with trips back to Chattanooga or even Franklin. Leila's had more appointments than Logan with every specialist you can imagine. We've been to the pediatrician, retina specialist, gastroenterologist, neurosurgeon, cardiologist, pulmonologist, pediatric surgeon, hip ultrasounds, head ultrasounds, lab work, weight checks, NICU developmental clinic, etc., etc...at least two appointments every week BUT things are looking good : )

We've been to the neurosurgeon several times for Leila since we have been home and thank the Lord we haven't had to get a shunt. We're still not out of the woods yet but the first ultrasound was improved and has since been stable. He says if it continues to be stable we can start spreading our visits out a lot more. They won't do a shunt unless they absolutely feel they have to for her health. I like that we have a doctor whose not going to rush into something permanent. The cardiologist said her heart looks great and doesn't feel like he needs to see her for another check-up for several months. We're still on a little bit of oxygen but we did an overnight home study this past week and she is keeping her oxygen levels up much better than when we left the hospital so hopefully that won't be much longer. The eye doctor feels like her eyes are also doing great so he said one more visit to him and we should be done with regular check-ups there as well. We've also been able to come off some medicine that we had to come home on and they say she is exactly where she should be developmentally at this point. Overall, Leila is doing great! We couldn't feel more blessed!

Logan hasn't had to have as many doctor's visits. When we first came home we thought he may have to have eye surgery but thank God his eyes have greatly improved to the point that we are officially DONE with the eye doctor for him! He hasn't escaped all surgeries though. He will have his first on August 14th to fix his hernia. Because he was so premature they will keep him overnight to monitor him afterwards. Logan is also where he should be developmentally and has done awesome since coming home.

Both babies are gaining weight very well. Our last weight check was this past Monday. Leila weighed in at 9lbs. 12oz. and Logan 8lbs. 12oz.! My babies are getting so big!

We are so blessed to be home and to not have had any scares or trips back to the hospital since we came home at the end of June. GOD IS GOOD!!!!

Now for some more recent pics...

happy girl

I've known Betty a loooong time. She came to meet the babies.

I've also known Brittany a long time. This was the first time our little ones got to meet each other.

My beautiful niece Alyssa came all the way from Key West to meet her cousins.

This was the day Logan came home from the hospital.

The day Leila came home.

It's kind of hard to tell but they take up sooo much more of their car seats than they did when they came home.

When Daddy is at work we try to eat together. We usually end up looking like this...

and this. It's so cute how they always find each other's hand/ arm to hold on to.

THINGS I WANT TO TEACH LEILA

2012-07-26T18:58:00.002-07:00

Leila, One day when you read this, I hope you will take these things to heart whether or not I have been successful at teaching you these things.
1) The most important thing: God loves you. He does not sit in Heaven with a big hammer waiting for you to mess up so he can smash and punish you. He loves you so much that He sent his son, Jesus, to pay the penalty for our sins. Jesus rose from the grave and is alive today and loves you very much. The only secret to eternal life is through Jesus.
2) Your mom, dad and grandparents love you very much
3) Your extended family and church family love you very much
4) You have the ability to do anything if you try hard enough, doctor, lawyer, engineer, scientist, artist, missionay, mom.
5) Don't listen to the media's opinion of how women should look. God made you just right. Don't try to be like women you see on magazines and TV. Be yourself.
6) Wait for the right guy. Don't settle for just anyone but wait for that person that you can't live without.
7) Girls don't have to be girly. You can be interested in cars, sports, or anything as long as you remember that you are a lady and how to act like a lady.
8) Your response and attitude to challenges in life will greatly help the people around you "a soft answer turns away wrath"
9) Love your mother and respect her. I'll do my best to demonstrate.
10) Don't ever stop being strong. You will always be my sweet miracle baby girl.

THINGS I WANT TO TEACH LOGAN

2012-07-03T17:02:00.000-07:00

Logan, one day when you are able to read this for yourself, I want you to know that these are the things I want to teach you. Some of these are things that I have learned and some that I am still learning today. I write this for you, but also for me so that I will remember these things years from now. In no particular order:

1) The most important thing: God loves you. He does not sit in Heaven with a big hammer waiting for you to mess up so he can smash and punish you. He loves you so much that He sent his son, Jesus, to pay the penalty for our sins. Jesus rose from the grave and is alive today and loves you very much. The only secret to eternal life is through Jesus.

2) Your mom, dad and grandparents love you very much

3) Your extended family and church family love you very much

4) Music is fun. We use music to praise God and it is very easy to learn to play an instrument for this purpose.

5) In everything you do, do all for the glory of God. Whether it is work, play, music, worship or serving, give 110% so others will see your light.

6) Treat the ladies in your life with respect. Your mom, your sister and one day your wife. All men need help in this department. Try to learn this early.

7) Protect your sister. She has been through more in her first three months of life than most adults will in their entire life. She might need your help one day.

8) Stress is bad. Laughter is good. Try to learn to turn stressful situations into funny situations. I don't know how to do this, but I hope you can learn.

9) Learn to study God's Word. Reading it is good. Studying it like a text book is better.

10) Reading, writing and arithmetic are fun. Calculus is not hard.

11) Don't be afraid of a challenge. The sense of accomplishment from overcoming a challenge is exhilarating.

12) Darth Vader is cool. Not because he is the bad guy but because he becomes the good guy in the end.

13)It is very important to have a big imagination. It will help in so many ways. Plus it is fun.

14) Legos are the pinnacle of childhood toys.

15) Books are awesome. You can learn from them or take an adventure.

16) Prayer is powerful. It helped bring you through the first 3 months of your life.

17) Fishing is fun. I havent fished enough in my life.

TWINS?

2012-06-29T18:36:00.001-07:00

Who said twins are supposed to look alike? I would put some more words here but it is hard to type with Logan in one hand.

Sister likes to cuddle with her brother

Happy to be home

GOING HOME

2012-06-26T19:20:00.002-07:00

Thanks to God for bringing us to this point. Yesterday Leila was discharged from the hospital and we packed up our stuff and left the Ronald House. She is tethered to an oxygen tank but we made it home. I would post some pictures but I dont know where the camera is in the mess we call our living room now. The real challenges are ahead, making sure they gain weight, two to three doctor appointments every week, not much sleep, no time to get groceries, trips back to chattanooga next week for more head ultrasounds. But it is good to be home. One day it will be good to be in our real heavenly home.

Pictures of the two of them together are interesting since they look nothing alike. I will post those first when the camera is unearthed.

TODAY WASN'T THE DAY

2012-06-22T15:16:00.000-07:00

The doctor and her pediatrician in Tullahoma wanted to wait until Monday to discharge her in case she had problems taking the formula. That's understandable and is probably the best thing to do at this point.

We have a more serious problem though. Her head ultrasound, once again, brought more bad news. So they did a procedure to drain some fluid out of her spine to try to kick start the draining from her brain into her spine. Her next head ultrasound isn't until the end of next week. If they discharge her on Monday and she needs surgery for a shunt at the end of next week, that means re-admittance to the hospital. Only, we will already have moved out of the Ronald House and won't have a place to stay if she needs to have a shunt and recover for a week.

What do we do now? We have been praying for God's healing on this issue for three months solid and now we come to discharge time and there is a possibility of re-admittance. I don't know how to handle this...