Ella started the day feeding well, and Tina and I finished the day feeding well.

Miss Ella rocked down a whole bottle of food today!!! Yup, she took in the entire 75ccs during her 9 o’clock feed!!! What an incredibly exciting milestone. It was a bit of a bonus for me too because I just happened to be the one feeding her =). This is a huge first step towards our goal of having her take in a whole bottle every time she eats. During her next feed though, she only did about 20ccs, but we are content with the overall forward progress she’s making.

Tina, Ella, and I just got back from dinner at Maggiano’s. “But Josh…”, you say. “There is no Maggiano’s in Gainesville.” Oh, you are so correct my friend. You see, we all had such a great time escaping Gainesville last week, that we decided to do it again. Only this time we ventured out to Jacksonville.

The drive out to Jacksonville was pretty uneventful, except for one green light. Well, it was a red light when Tina decided to take a drink of her iced coffee. It turned green right when she started to take a sip. Having no idea that she was even drinking from a large mouthed mug (she was in the back seat with Bun), I do what every normal driver does at a green light and hit the gas. Needless to say, Tina wasn’t too thrilled about the coffee all over the front of her white shirt, but at least she brought a sweater that she can wear over…oh…whoops…she just spilled formula from Ella’s g-tube on the sweater. Ahhh…good times.

So, what was our main draw to Jacksonville? I’ll give you one guess…yup…a mall. More specifically, the St Johns Town Center Mall which is an outdoor mall with a lot of chichi retail outlets. Not that we did any shopping (Ella did try and convince us that Louis Vuitton had baby clothes), but the fact that we could stroll around outside, in the fresh air, on a picture perfect day, with the Bun.

We started at one end of the mall and worked our way down to the other. We originally thought we were going to get some food to go from Maggiano’s, but we discovered they had an outdoor seating area which would accommodate us and minimize Ella’s exposure. What really made us feel comfortable about eating there was the corner they were able to tuck us into, and the fact that Tina could stroll Ella right to the table from outside, without even entering the main restaurant.

Ella handled herself well, and didn’t fuss too much, at least until her feeding time around 9pm. We were able to discreetly bolus feed her through her G-Tube which in turn gave her good reason to fall asleep. Tina and I were then able to finish up dinner, with Ella sleeping contently next to us. We had a fabulous time enjoying the moment and the food. Maggiano’s is my favorite Italian restaurant (chain), plus, we didn’t have to pay for dinner because one of Ella’s biggest fans hooked us up with a gift card (Thanks for the love Jeanie!!).

At this moment (1:00am), Tina is asleep next to me, and the Bun is asleep in her travel crib. We’re staying overnight in Jacksonville and will drive back to the apartment tomorrow.

Something that struck me during dinner tonight (this happens on a pretty regular basis), is really how far we’ve come, and what a true miracle Ella Renae is. It’s so hard for me to imagine all that we’ve been through. If we didn’t have this blog, with its daily record of events, I don’t know I would believe all we have been through. But we have…and we are so blessed to have gone through it.

Thank you again for staying with us during this journey. You faithfulness in support and prayer continues to be our strength. It means so much that you connect with us through the blog on a regular basis. May God Bless you and your family in your faithfulness to Him, and to us.

Psalm 100
A psalm. For giving thanks.
1 Shout for joy to the LORD, all the earth.

2 Worship the LORD with gladness;
come before him with joyful songs.

3 Know that the LORD is God.
It is he who made us, and we are his;
we are his people, the sheep of his pasture.

4 Enter his gates with thanksgiving
and his courts with praise;
give thanks to him and praise his name.

5 For the LORD is good and his love endures forever;
his faithfulness continues through all generations.

I’m writing this post from our friends’ house / driveway (the Boemler Wareings). “Wait…aren’t they in Orlando?”, you ask. Yes…in fact they are.

Tina and I got a wild hair this afternoon and decided to drive to Orlando. She needed to return some things at the mall, plus we just had to escape the apartment. So we secured a night at a decent hotel and hit the road.

Hitting the road requires bringing a few extras like: all Ella’s meds, formula, food pump, oxygen tanks, an oxygen concentrator, DVD player for the trip, and many other extra fun things that packed the car full.

During the drive down we made some calls and asked our friends if they wouldn’t mind a quick visit on our way to the hotel. They were surprised at the request but excited nonetheless. Ella really behaved herself during the drive and Tina was even able to feed her while she sat in her seat.

Our first stop was the Mall at Millenia. We thought we might take Ella in for a stroll, but it was so busy, we didn’t want to expose her that much. So I stayed in the car with Bun while Tina ran around the mall.

Tina was gone quite awhile, but it was time well spent because when she got back she looked rejuvenated. Nothing like a little mall time to fill Tina’s batteries =). Bun and I enjoyed ourselves in the car too. We spent some time watching her DVDs and we spoke to one of Ella’s biggest fans on the phone. So awesome to talk to a friend’s friend who loves our girl so much (Great talking to you Jeanie!). Amazing how much love this little girl is generating.

After this, we then bolted across the street and Tina returned a couple items to Target. Once again, Ella and dad stuck it out in the car. Something cool happened though while I was with Ella. Maybe my faces were a little extra funny, but I got more than a smile, I got a little giggle out of her! So picken’ cute! Looking forward to more of those.

It was feeding time for Ella so in the middle of the parking lot (and rain) we tried to make that happen. Ella fussed a good amount ’cause she was getting tired, but we finally got her settled down. Tina and I hadn’t had any dinner yet and we noticed there was a Mimi’s Cafe around the corner. Once again we want to minimize Ella’s exposure to sickness, so Tina went in and scoped the place out. She talked to the manager and they got us hooked up in a room to ourselves. How great to have dinner out as a family, and have it be Mimi’s to boot!

After the quick meal we headed down to Doug and Laura’s place to give them a hug (and borrow some WiFi to write the post). And that’s where we are now.

Going to wrap this up because it’s midnight and we need to feed the Bun again and check into our hotel.

Happy Easter!

“You’re silly Dad”
“Thanks Dad”
“Where are we going Dad?”
“I lost my binky Dad”
“I’m tired Dad”
“You sure do make funny faces Dad”
“Why is there hair on your chin, but not on your head Dad?”
“Does it help if I pull on this Dad?”
“You make a great pillow Dad”
“I Love you Dad”

Ella talks all the time. Her eyes express so much, even more than words ever could. Some of it comes through in the pictures you see here, but they only scratch the surface of her true expression. These “words” from her encourage us every day. They affirm what we’re doing for her, the care we give her, the love we show her.

Ella Renae totally relies on us.

We feed her
We change her
We bathe her
We give her medicine
We clothe her
We hold and comfort her
We help her breathe with oxygen
We read to her
We sing to her
We play with her
We love her

Ella would not survive on her own without us providing for these needs and others every day.

This illustration reminds me of how I am to rely on God: completely, fully, and in all things.

Ella relies on us every day, it’s my job to rely on my Heavenly Father every day.

Looking at my baby girl reminds me continuously our Father’s love for us. It is unfailing, unwavering, and unconditional.

Thank you Lord for loving us unconditionally. You take care of all our needs. You bless us even when we don’t deserve it. Thank you for giving me these glimpses of You through my daughter. May she continue to be glorifying to you every day. Amen

Ella had a good day overall.

During one feed, Tina set her up on her Boppy in front of her video player that Grandma West got her. The Bun took to it well and the DVD distraction helped her gulp down 25ccs. She had pretty good success with the other feeds too, with minimal or no retching.

We took a nice 30 min walk around our neighborhood tonight, with Tina holding Ella in her Baby Bjorn, and me in tow with an oxygen tank. Ella behaved herself and we all enjoyed the fresh air.

I was happy to discover that I have tomorrow off of work (totally spaced it) so Tina and I will be enjoying a long weekend with the Bun.

Your love, support, and prayers continue to strengthen us all. Thank you so much for them.

The Bun had a pretty good day today. This morning, she and I had some one-on-one time while mom caught up on her sleep.

Ella took her first feed well with minimal discomfort (g-tube only). Her feed with the bottle at noon was probably the best she’s done in awhile from a disposition standpoint. She only took 20ccs, but didn’t put up much of a fight. She also did well at her 3pm feed, but had a major meltdown at the 6pm feed. I’m guessing the sleepiness factor played a part.

Today, we started adding regular sugar and a small amount of rice cereal (to thicken the formula and slow down the flow). Maybe that helped things along too. The coming days will be telling.

We took our girl for a drive late this afternoon just to get out of the house. We decided to head west down Archer Road and within 10 minutes Ella zonked out. We drove for about 25 minutes then turned around and headed back. Overall, she did well in the car this time. We’re trying to make a point to take her on short drives to get her more used to the experience.

On the way back, we stopped at a Mexican restaurant in the city of Archer and picked up some burritos to go. It was nice to take a break from cooking and we were pleasantly surprised that it was tasty.

As I write this my eyelids are already getting heavy. I’m guessing that I only do about 10% of the work that Tina does with Ella, yet I am totally wiped out. What blows me away is how amazing Tina is with Ella. Her patience even with the lack of sleep, and just how she can take care of Ella and maintain in so many other ways.

Tonight, I’m thanking God for Tina, and praise Him for this amazing girl who is a lot of work…but totally worth it.

Yup, the Bun and Grandma had a good time hanging out today. Not only was Ella having fun with Grandma, she had a fantastic day overall.

Once I woke up this morning, Ella and I spent some time together reading her favorite books and watching the Disney channel while we let mom go back to sleep for a bit. The Bun was so smiley and happy, it made for such a great time. Tina slept for a few hours, almost ’till noon, which I was glad to see her do.

After Tina woke up, and we had a bite to eat, we all piled into the car to go run some errands. Ella did well in the car, and we hope to get her more used to it as the days go on. We’re going to try and take some “practice” drives with both of us in the front seat so Ella can get accustomed to being in the back by herself.

Ella didn’t do too much work on the bottle today, but we’re doing better at getting her to take the full amount of food through her g-tube, which is key for her progress forward.

Grandma made us dinner tonight, and while she was doing the dishes, Tina and I looked over at our little girl and just marveled. We’ve had a total of 24 days at home with her (28 if you count the days in between going back to the hospital), but it feels like we’ve had her here for months.

We’ve spent time during the last couple nights, reflecting on all we’ve been through by looking through the blog. It’s amazing how far she has come and all the events that have happened. Already it doesn’t seem real! I can’t believe that we’re really here and Ella is over 7 months old!

God is so great, and we praise Him each and every day for the time we get to spend with this amazing child. (Thank you Lord!) Praising God for Ella’s testimony and the blessing of the community of friends and family that have gathered around us through the blog.

Thank you for keeping up with our story and sending all your love and support. Every comment, every letter, every card, every gift, every thought, and every prayer, means so much to all three of us. Thank you for blessing us, and may you continue to be blessed like we are by this amazing girl, Ella Renae.

If you ever wonder how we get the Bun to smile so much, the picture below says it all. Scroll down to see the view from the Bun’s perspective. =)

When you’re big you don’t need a reason to sweat. You don’t, right? My friends cannot grab a hold of this concept. They come up to me all the time “Jeez… what have ya been doing. You been jumpin’ rope in the attic?”…”…Well, I peeled an orange.. About an hour ago, why?”

Kevin James – Sweat the Small Stuff (2001)

Yes…Ella’s dad sweats…and sweats…and sweats. In fact, I’ve even been told that sweating is my super power. Yeah, well, if a bad guy comes around I’ll see where that gets me.

The Bun had a good day. She slept pretty well last night (only woke up about 10 times as opposed to 50). She still seemed a bit warm, but not as bad as the previous day.

We’ve had a solid day of feeding – Praise God! Ella consumed 70ccs during each feed every three hours with minimal issue. It seems like were getting back to where she was before. Now, she only took 40ccs total from the bottle today, but tomorrow is a new day.

It’s been nice having Ella’s other Grandmother (my mom) around. She’s gotten in some good Ella cuddlin’ and has helped us around here as well.

Thanking our Lord for another day with this precious girl.

Lord Jesus, we ask that you give Ella great rest tonight. We pray that she sleeps soundly and will continue to do so comfortably. We also pray that her feeds will continue to improve so that she will gain weight and grow strong. Praise you Father for how far she has come. Amen

Today was a nice lazy Saturday with the Bun.

Tina and Grandma went out for the day to do some shopping while I looked after Ella. I was surprised her level of fussiness because she didn’t sleep that well last night, and yet she really had a pretty good day.

Man, let me say that it’s tough when she doesn’t sleep through the night (which has been most of the time). The thing that makes it incredibly challenging is when she just can’t get comfortable, or if she’s a little congested, she’ll thrash around and rub her face which pulls out her oxygen cannulas.

If she didn’t require the O2, we could let her fuss a bit and settle down on her own. But we can’t do this. So from 12:30am to 2:30am I tried to keep her comfortable, but I woke up 12 different times to do so. It’s so hard because you don’t have a choice. Tina’s amazing because she’s able to do this throughout the night with her, but I figured I would try and give her a break. This two hour routine brought me to the brink and I finally surrendered, having to let Tina take over.

We’ve only had a handful of times since she’s been home where she’s slept solid through the night. We hope this gets better moving forward.

At this moment she’s down for the night I’m hoping she sleeps solid. I tried my best to keep her up most of the day, so we’ll see.

Overall Ella ate well, but we didn’t work as much as I would have liked to on oral feedings. That would be Ella’s oral feedings…I had no problems with mine =)

Thanks for the continued thoughts and prayers, for keeping up with us every day, and for loving the Bun.

The Bun had a good day and she’s really taking to the bottle (Praise God!!) She took as much as 60ccs during one feeding today which was really exciting.

We were also able to increase the volume on bolus feeds to 60ccs. She does cough and retch a bit, but we need to get the food in her so she can gain weight.

She also took another solid 4 hour nap today with part of that time sleeping on Grandma. Hopefully she sleeps through the night OK considering all the rest she’s already had.

When I was done with work today, I let Tina and Grandma go off together so Ella and I had some one-on-one time. I’m still in awe that our girl is really here with us. Just having this time with her is so precious and it means so much.

We are truly blessed.

Just the Bun and me
for alone time tonight
Mom and Grandma
escaped out of sight

Ella and I
we had great fun
reading some books
and tickling the tum

Stories of feet
and ABC’s
Dr. Seuss is the best
Miss Ella agrees

From Aunt Annie’s Alligator
To a Zizzer-Zazzer-Zuzz
Left feet and right feet
and fur feet with fuz

Some swinging involved
and holding with care
surprises in diapers
and grabbing chest hair

Ella Renae
She’s a gift from above
I have never before
experienced such love

From the top of her head
to the tips of her toes
every day that goes by
greater my love grows

She’s so special to many
this sweet little girl
lots of eyes have seen her
from around the world

Thank you to all
for continuing to pray
it makes a big difference
each and every day

Praising God every moment
for each breath she takes
made perfect by Him
without any mistakes

Thank you Lord for The Bun
she’s a gift without measure
taking care of her is great work
but ultimately, our pleasure

Our Faith is in you
We trust every day
that wisdom will be granted
to lead Ella the right way

I pray the Lord Bless her
and grow her up strong
She is yours dear Jesus
to you she belongs

I’m not sure how either of my girls do it. Ella was up pretty much all night and mom was right there with her. Ella has also slept very little today, and Tina has slept even less. As I write this, Tina is rocking the fussy Bun, calming her down, and….she just feel asleep and is now being placed in her travel crib.

Ella continued her rough spells throughout the day. She started off early this morning before her continuous feeds were totally done. We went to vent her, started to do so, and no food was coming up into the syringe. This was mysterious considering how upset she was.

Well the mystery was solved as soon as I felt around Ella’s side and realized her medicine port in her feeding tube opened up. So instead of draining into the syringe, the food was going all over her…yay. Considering it was 5:30am we weren’t about to give her a bath, so we did the baby wipe thing and got her cleaned up.

Tina then took her out into the living area while I slept a bit more. After a couple hours, we traded so Tina could catch some zzz’s before my workday started.

The trend of Ella fussing continued throughout the day. Most of the time she fussed, she was very inconsolable and would often require bringing her oxygen up to a liter, just to help her catch her breath. Singing does help to soothe her, and I’ve been doing this from the day Ella was born. The other thing that works is the singing monkey Aunt Shannon brought her a couple of weeks ago (thank you!!). In fact it’s crazy how well it does work.

Even with the consoling, these spells are so incredibly hard to watch. Some are so severe you think she’s going to pass out. I’m sure those of you with kids can relate to seeing you child in major discomfort. It’s just so hard to see over and over again too.

Tina does amazingly well through these episodes. I have times where I can handle them, and times where I have to hand her over to Tina. Thank God for my rock of a wife.

Ella also spiked a bit of a fever this morning (99.8 – 100.4F), but it has since dropped back down to normal. I’ve heard doctors say that teething does not cause fevers, but teething babies that put everything in their mouth is the cause of a fever. I’m not totally convinced that their theory is true, but either way, she had a fever.

I also believe her teething is the primary catalyst for her times of discomfort. Not that the feeding issue isn’t there. It is, and it’s something we’re still trying to deal with. But the teething has caused her even more congestion, which makes it harder to breathe, which is an area that Ella does not need more weakness in.

The secretions also drain into her throat, making her gag, which then spins her into a retching fit, which is making the feedings that much more difficult.

Even the most popular remedies for the teething (thank you for the suggestions) are causing more issues. She has such a sensitive gag reflex that almost anything you put in her mouth, besides her binky, will cause her to gag (even her binky does sometimes). We’re working on this, but it’s hard to make progress while she’s feeling the way she does.

We tried the Baby Orajel hoping that would east the pain, but instead, it made things worse be increasing the amount of saliva in her mouth. That’s no good for the Bun considering the scenario I described above. Plus, she does not dig the numb feeling in her mouth and down her throat as she swallows.

I did see the homeopathic teething pills some of you have mentioned, and I may take a look at them too. It’s a catch 22 though because if it increases her saliva, it could make things worse. Plus, Ella doesn’t take anything through her mouth yet, only through her g-tube, so I don’t know how she would handle having a pill in her mouth (even if it does dissolve quickly).

I’m also keeping my eye out for a teething device that vibrates. Some of you have mentioned that, but once again, not sure how Ella will do with it considering her oral aversion.

I think this situation has been overwhelming these last few days, and what has made it even more difficult is my struggle to trust God and hand it over to Him. My gosh, how many times have I learned about peace from surrender!

I can make excuses for why I haven’t been able to. Whether I’m too busy with work, or tired, or just taking care of Ella. The truth is, I need to draw close to God first, then take on these other things.

I really miss the interaction with friends and being social. I get energized from being around people, but with our state of affairs out here, it’s hard to do. I’ve even said that when things settle down, I’ll make time to get together with people.

Well, today I realized just how crazy that statement is. Things are not going to settle down, so I need to make time for what’s important. I need to take care of myself, so I can be a better husband to my wife, and father to my child.

So, I am going to have lunch with Matt tomorrow, a fellow NICU parent. We met him and his better half (you know it’s true Matt) on January 5th. Just talking to him on the phone today was such a blessing, and the spiritual support that we’ve received from this couple has been amazing.

And to top it off, we’ll be having lunch at Sonny’s BBQ so things just have to get better after eating there. =)

Thank you for all the unwavering prayer support. We continue to lift up our little girl’s health, and pray that her feedings will improve, and for the teething symptoms to subside. Our God is an awesome God and He is faithful through all these things.

Matthew 6:33
But seek first his kingdom and his righteousness, and all these things will be given to you as well.

Whew…I finally got a chance to come up for some air. I’ve been swamped with a project for work but I was able to get it done on time. The only reason I was able to do this, was because of my amazing wife who let me focus on work while she focused on the Bun.

Well, last night was my turn to give mom a break. Tina slept in the guest room, something she allowed me to do multiple times last week, while I spent the night attending to Ella.

Let me tell you, it is TOUGH taking care of her at night. When she’s asleep, it’s all good*, but when she’s fussing ’cause she can’t get comfortable, or she needs a diaper change, or she’s pulled her oxygen cannulas out, or her binky fell out, or her food pump finished too soon, things get a little rough. Especially when you don’t have any sleep, or are trying to sleep, or are hunched over her crib while falling asleep and your back cramps up.

*By the way, when I say she’s all good, she’s all good, but I still wake up every so often to see if she’s ok.

I’m sure most of this is “normal” for any baby this age, but I don’t have a concept of what is normal considering this is our first kid.

Anyways, Ella and I survived the night, no worse for the wear, and the multiple cups of coffee in the morning helped a little too. Coffee for me that is…heh. Ella and I did our best to let mom sleep in. She did pretty good too, stumbled out around 10:45am.

Ella did well with her feeds today. We did bolus feeds of 45ccs and she took all but one without issue. We think we’re also seeing a trend too. All the feedings that went down well occurred when she was asleep. The one that gave her problems was administered while she was awake.

Ella’s teething symptoms seemed to have intensified. She keeps rubbing her face and wanting to gnaw on things. She took my finger for a bit, but then it seemed to inflame her gums even more. We thought we would try some Anbesol but we haven’t been able to get to the drugstore yet.

She doesn’t like any of the different teething rings, which is why we’ve ended up letting her gnaw on our knuckles. I had an idea to put one of our fingers in ice water and see how she likes that. That didn’t work so well, but it spawned a better idea. Keep a couple binkys in ice water and swap them out every so often for her. We’re doing this right now, and she really seems to be digging it!

Overall, the weekend has been pretty restful. I have tomorrow off for presidents day which should give us one more day to rest and catch up on other life things, like taxes (yay).

Before I wrap this post up, I want to share about a special moment we had this week. In the midst of all the recent hospital drama, and Ella’s feeding issues, and everything else, we paused and took stock.

Last Tuesday we had our first clinical meeting with Dr. Kays outside the hospital. Normally, for anyone else, this is just a simple check up to see how your kid is doing.

But…wait….this is our Baby girl….the one in the picture at the top of this blog….the one who only had a 20% chance to survive in Denver…that baby girl….Ella…THE BUN!!! She really made it…she’s thriving…she’s gaining weight and making forward progress.

PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!! This was such a magical moment for us. And I think it really hit me in this “normal” moment, just how amazing our girl is, and what an incredible gift from God she is.

Thank you Lord for our miracle girl and for everything about her. She is EXACTLY who you desired her to be, and she’s perfect in every way. Thank you Lord…thank you…thank you.