Posted (Tina) in All Posts on March-31-2008

Today was an overall good day for Ella. She was in a happy mood and smiled a lot. That makes the day more fun.

She did exercise her independence when we decided to go to the physical therapist. As soon as the session started, Ella decided that she wanted nothing to do with it. It was uncomfortable and she just didn’t want any part of it. In a proactive manner, I decided to increase her oxygen flow, but even after lots of calming and cuddling, I could barely get her to settle down. Finally after working herself up real good for 20+ minutes, she simply wore herself out and fell fast asleep in my arms. She didn’t even move much when placing her in the chair to drive home.

The PT acknowledged that maybe she moved too quickly today for Ella. Also, she noted that this needs to be a very slow process and felt that even bringing Ella for this session is another small step in the right direction. I did let her know that this is typical behavior for Ella whenever she has to try something new. Just like when we placed her in the car for the initial time, she had a melt down. Hopefully, the more exposure to the environment and the PT, the more Ella will get used to the idea.

The PT allowed us to borrow this chair that will help Ella sit up. Since Ella had such a meltdown, we were not able to try it at her office. However, later in the day, I was able to try the chair at home. Situated with the boppy around it, I can adjust the angle of the chair. I started with Ella being in a reclined position. Over several minutes and lots of distraction, I was able to prop it higher so that she was in a more upright position. She tolerated it for about 15 minutes total.

We did not make much progress with feeding today, although she still took one bottle for 55ccs. That is still really good work for her. All of the rest of the feeding sessions ended up at 15-20ccs, but at least we had one stronger session.

Today was the first ever CDH Awareness Day. It is so good to see that organizations are cropping up to make a difference. One year ago when we received this diagnosis, there were few organizations, websites, blogs, etc. Just this past year, it has grown tremendously. Although we were not able to be out in public participating, we hope to be more involved in the coming years.

I just keep looking at our daughter in awe of what she has endured and who she is today. God made her perfect. She is so beautiful. I love her so much. We’re so thankful for her.

We’re continuing to pray for direction on the best way to make it back to Colorado. We have a decision to make in the next day regarding timing and ask that He would give us divine guidance.

We’re so thankful that God provided the resources for us to make the trip to Florida and give Ella Renae the best chance at life. And now we’re excited to think about going back home to Colorado and enjoying our life together as a family with all the comforts of home.

Thanks for the support and prayers.

Posted (Tina) in All Posts on March-30-2008

Today was relaxing. We were able to secure late check out at the hotel and spent the morning being lazy together, all 3 of us.

Another exciting first feed of the day: once again, she took 75ccs via bottle. The other feeds did not turn out to be real successful, but we are excited that she did another entire bottle orally.

Regarding bottle feeding, we have a few goals to work towards. When we are feeing her via bottle, we are connected to her g-tube at the same time. This is to let any air out while she is eating. Eventually, we hope that she gets a better sucking technique and swallows less air, so that this step is not required.

Also, we hope to work up to her taking 4 bottles of 75 ccs each, per day. We know that she can do 1 bottle per day, but we need to work up to 4 bottles a day. And of course, she is still fed at night via a food pump to make up for the additional volume and give her some extra calories.

Finally, as she gets better technique, the food should go faster. Right now, it takes up to 30 minutes for her to finish the 75 ccs. It should take about 10 minutes once she has perfected it.

It will likely be a long time until she is able to eat enough orally during each day to not require a g-tube. And although we are a long way off, it is so encouraging to see her meet these small milestones.

We have physical therapy tomorrow afternoon. That will be our big event for the day.

We have noted that Ella’s face looks fuller too. In the past, this has not been a good sign. It typically means that she is retaining fluid. The biggest change we have made since past Tuesday is adding corn oil to her food at night. Although we did not see a drastic change, it is possible that it is slowly causing her to retain fluid. If she retains too much fluid, it begins to affect her respiratory status. This is what sent her back to the hospital 4 days after her initial release from the NICU. It is our hope and prayer that it is not affecting her fluid status and that she is truly just getting chubby cheeks!

It was so nice to getaway again this weekend. We are excited for the day when we can go home. Gainesville is a small town without the amenities of a large city, and being city people, we crave the comforts of a large city.

There are so many more services and places to go within the Denver metro area, so it won’t necessarily require a trip if we just want to get out of the house with Ella. Right now, it requires a 2 hour drive to any major city with interesting services and amenities.

We’re trying to enjoy our time in Florida, but admittedly, we are anxious to go back home. When we started this journey, we anticipated being here in Florida for 8-12 weeks. We could have never expected that Ella would stay in the hospital for 6+ months. And we know that it was the right decision to continue to stay for a time after her release from the hospital.

Now, we are praying for wisdom and guidance on when to go home to Denver. Also, how to get Ella back home to Denver. Please join us in praying that we would not be anxious, but rely on Him to reveal His plans to us.

Philippians 4:6
Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.

Posted (jooosh) in All Posts on March-29-2008

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.

Posted (Tina) in All Posts on March-28-2008

Ella was fussy a lot of the day, but I think it was because she had trouble napping. For some reason, she couldn’t get comfy. Once she finally took one in the afternoon, she woke up very happy and ready to face the world. My favorite part was when Pumps decided to come and see what was causing all the noise!

We had the OT come visit us today and he recommended giving her the next stage of nipple for the Dr. Brown’s bottle (Stage Two). You could definitely see a difference. The flow was quicker because Ella was having to do more work to keep up with the flow. When she was sucking on the bottle, you could see her nostrils flare more frequently. Several times she had to stop simply to catch her breath. Remember that the coordination of sucking, swallowing and breathing is all new to her.

The great news is that she took 120ccs total via bottle today, with another session at 45ccs. Although it feels slow, I can easily look back and see how much progress she is making since we started this in mid-February.

A nice surprise tonight: a local friend came by to see us and brought a pizza and garlic rolls to share! Sara, the leasing agent from our prior apartment community, has been tracking Ella’s progress for months now and is in love! She wanted to come and visit her.

I was so thankful that Ella had that much-needed nap earlier. She was in a great mood for Sara. Since Ella has been having stranger anxiety, we wanted to take things slow. We know it will not be the last time that Sara visits, so hopefully Ella can get to know her better each time.

I’m so glad it is Friday. Although I do not have the stress of a work week anymore, it does mean that Dad might kick in to let me have some extra zzzzs. Plus, it is family time. All of us can hang out together during each day. Because of this, I love the weekends.

I hope that everyone out there has a great weekend too. Thanks for the support and for loving our baby girl.

Posted (Tina) in All Posts on March-27-2008

The day started with a visit from Nurse Michelle. It was nice to see her. We walked across the street for a coffee while Josh watched Ella for a bit. It was refreshing to have a mini escape.

Ella had a great day for feeds. She took the bottle for 4 of her feeds, totaling 105ccs (approximately 3.5 ounces). She took 45ccs at once on the first feed this morning! That is her second best. Last Saturday, she took 50ccs at once. That gives us such hope. All of this requires lots and lots of patience, but Ella is slowly making progress with her feeds.

Another bit of good news: we have gone two nights with the addition of corn oil and have not seen any significant changes. Yesterday, her stools were a bit looser but today was normal. So we are hoping that the only long term effect is weight gain!

Also, I did some of the PT exercises with her today. The first few times, she was more receptive. We focused on her head control and she did really well. As the day continued, she was less tolerant and started to cry hard if I made her work. Oh well, at least we had a couple of good sessions. Hopefully if we are persistent and do this each day, she will slowly get stronger and it won’t be quite so much work.

Ella had a great time in the bath this evening. I think her favorite part is afterward when she is all clean, warm and gets cuddled in her towel. She is so smiley.

We took Ella on a short walk this evening as the sun was setting. Although the walk was short, Ella seems to be getting better and better with tolerating walks. I like it when we can take her in the car or have her go on a short walk. It gets her out in the real world and just slowly gives her some exposure.

I read today about another CDH baby girl that had her repair surgery. Looking at the photos and reading the details made it all come back to me. It seems so distant, and yet it was just yesterday. I don’t know the family, but I lifted up their baby girl to the Lord and asked for His guidance and protection for her and them. If you think about it, please say a prayer for this family.

Psalm 23
The LORD is my shepherd, I shall not be in want.

He makes me lie down in green pastures,
he leads me beside quiet waters,

he restores my soul.
He guides me in paths of righteousness
for his name’s sake.

Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD

Posted (Tina) in All Posts on March-26-2008

Well, she’s not quite doing yoga yet…

The event for the day was going to physical therapy. We had a great first session.

When we initially arrived, we could overhear the PT working with some other kids. Although they were in the other room, our concern of minimizing exposure surfaced. She completely understood and told us that she had an isolation room specifically for these types of cases. That was huge in alleviating our fears and a good first impression.

Ella was in a great mood and the PT was amazing with her. You could tell that she has years of experience and knew exactly what she was doing. It made us feel like this is the right person to work with Ella.

After her assessment and doing some basic exercises, she decided that Ella needed to visit twice per week. That was not a surprise, as we know that Ella has a lot of catching up to do. Her sessions will be for 30 minutes, but we will be working the entire 30 minutes. Our next appointment is on Monday, March 31st.

Speaking of Monday, March 31st, it will be the first annual CDH Awareness Day. Be sure to wear turquoise in support of all CDH babies, including Ella! If you’re looking for official CDH Awareness Day gear, click here.

As we watched Ella try her best to do some physical exercises, it was a clear reminder of how much she has been through since her birth. The PT commented that she has been through a lot, but had lots of positive affirmations for the Bun too, considering all she has endured.

We praise Him for our baby girl. We just fall more in love each day. Thank you for the love and support.

Yes, Dad snapped this pic of his girls catching beauty sleep this afternoon!

Posted (Tina) in All Posts on March-25-2008

Today was a good day for Ella.

Our highlight was visiting Dr. Kays. Unfortunately, Ella did not gain as much weight as she should have over the past 2 weeks. She only gained 100 grams, taking her to 11 lbs, 14 ounces. Last time, she weighed in at 11 lbs, 5 ounces. So, it was better than losing weight or staying the same but we were hoping for more.

I did mention that we did not have the oil to place in her nightly feeds. So Dr. Kays asked the nurse practitioner to go over to the phone and make a call to the nutritionist. She came back and informed us that we are to use corn oil. We are to place 3.5ccs for her nightly feed of 200ccs of formula. Apparently, this small amount will give her the additional calories and extra weight gain. Only time will tell. Dr. Kays admitted that he is not sure what the corn oil will do to her stools. Yippee…that will be interesting.

Regarding her labs from last time, all her electrolytes checked out fine. Her BUN was 22, which was down from the prior labs of 29. I thought it was strange to have that much of a change and I inquired. Dr. Kays explained that there can be a variance but it is in the right range, so he is not concerned. Thank goodness that we did not have to do labs today.

Dr. Kays was not upset that we reduced Ella’s oxygen to 400mls. He noted that her color looked good and asked how her saturations were looking at home. Although the office monitor only picked up a saturation of 94 again, I explained that her numbers are good at home according to our pulse oximeter. That was enough information for him.

There was a bit of granulation tissue around her g-tube, so they burned that off again. I’m so glad it doesn’t hurt Ella – – she barely notices that it is being done. We had less granulation tissue this time around, so I’m hoping that it continues to decrease.

Aside from offering corn oil, Dr. Kays said that he did not have a lot to offer. He thought she looked good. We just need her to gain weight. We are hoping that the oil does the trick.

When I asked about our next appointment, he offered 3 or 4 weeks from now. In 3 weeks we already had an appointment with the pediatrician for her next synagis shot. So, that meant 4 weeks was the magic number. I can’t believe that we graduated to once every 4 weeks. That is good – – we are going the right direction.

When we go to see Dr. Kays next time, he ordered for Ella to have an echocardiogram. I did let Dr. Kays know that it seems that Ella is taking longer to turn purple/blue when she gets upset. She can go there, but it takes more and more. I asked if maybe that indicated that she was shunting less. He explained that it simply means that she is growing, her lungs are getting stronger and that she is getting better.

Dr. Kays did try to have Ella sit up. He even pushed her by having her lean over and place her elbows down between her legs. She pitched a fit. She simply has no strength. I’m hoping that our physical therapy appointment tomorrow goes well.

Please pray for Ella to gain weight, that she will not have any adverse side effects from the corn oil, and that she will be receptive to the physical therapist tomorrow.

Posted (Tina) in All Posts on March-24-2008

I can’t believe that Ella is already 8 months old.

Tomorrow we have our appointment with Dr. Kays. We pray that Ella has gained weight (two weeks ago, she weighed in at 11lbs, 9 ounces). We never heard back about the oil to add to her food for calorie enhancement. We hope to follow-up on this and begin adding it over the next few weeks. We’re hoping that it does not cause any issues. If you remember, the MCT (medium chain triglyceride) oil in the Pregestimil formula caused her lots of grief. Also, any non-MCT oil might cause her lymphatic system to empty out more fluid via her thoracic duct. Since Ella is always fighting the fluid issues, we will simply want to monitor her closely.

In addition, we did not hear the results from her labs 2 weeks ago. We tried to follow-up and heard that her other electrolytes looked “good” but were told that the BUN (blood urea nitrogen) did not come across on the labs. This is our main gauge for dryness in Ella’s body. Since she is taking such a high dose of diuretics, our assumption is that Ella will need to have blood drawn again. We are not looking forward to that part!

Hopefully, Dr. Kays will be happy that we reduced her oxygen to 400mls. Maybe she will perform and give him a better number when he checks her saturations. As I type this, Ella is sound asleep with her saturation at 99 and her heart rate at 106. So, she is getting stronger. Praise God!

Ella had a pretty good day. She was real happy besides a couple of moments when things weren’t going her way or we tried to make her work (e.g. having her sit up). The other night, she started rolling from side to side in frustration. This is promising to see her do this activity on her own.

Today, her favorite activity seemed to be laying on her activity mat, grabbing the toys above her and rolling from side to side. She was happy and content. As I mentioned previously, we are excited for her first physical therapy appointment on Wednesday this week.

When Ella turned 6 months old, we were discharged from the NICU (first photo below). Although we had another hospital visit shortly thereafter, it is amazing to think that two months has passed (bottom photo below).

Each day we praise God for our baby girl. She is so special and so sweet. We just love her so much and although this parenting role is the toughest job, we are so blessed.

We couldn’t have imagined this journey. It is amazing to see how far God has carried us.

Thank you for your continued prayers. They mean so much.

2 Corinthians 1:3-4
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God.

Posted (Tina) in All Posts on March-23-2008

Could there be a cuter Easter Bun-ny?

As a continuation from yesterday, our great escape was a nice change of pace. By the time we ended up arriving to the hotel last night and hooking up an oxygen concentrator, medicines, food pump, putting together a travel crib, a pulse oximeter, etc, etc (you get the idea), our heads hit the pillow at 2:45am. Ella decided to wake up at 6:30am with a huge smile that simply said, “Happy Easter!”.

This was one of the first nights in recent times that Josh was sleep deprived. It was very evident as he laid around with Ella this morning.

I went to grab coffee at Starbucks, just a short stroll away. We had muffins and celebrated Ella’s first Easter morning hanging out in the hotel. Although it was relaxing, we’re excited for her to grow and get strong so we don’t have to take as many precautions with exposure. Then, we can go to church as a family for Easter…I’m sure the time will be here before we know it.

One thing that made the morning even better: we were able to arrange for late check out at 2pm. That was great because mid-morning all of us snoozed for another 2 hours. That made facing the rest of the day more bearable.

From there, we decided that we wanted to be outside with Ella. It was a nice Florida day, not too hot. So, we opted to drive south to Celebration, Florida (a master planned community designed by Disney). We grabbed lunch to go and ate in the car with the windows down, so Ella could people watch with the breeze hitting her face. She could hear the trees rustling and the birds chirping.

Josh and I watched other children enjoying the Easter holiday. It gave us visions of Ella running around in a spring dress collecting Easter eggs in a basket. Some day…

Once our food settled, we decided to try and walk some of it off. Nearby there was a nice lake with a path. We went around once and ended up at Starbucks. Yes, Ella visited her first Starbucks, so of course we had to take a picture for future reminiscing.

Around 4pm, we decided that we would head home to Gainesville which is about a 2 hour drive. When we were about 1 hour into the drive, a light bulb went off in my head. I remembered that we left some of Ella’s food and more importantly, medications in the refrigerator of the hotel room. Oops…

So, we turned around and went all the way back to Orlando. That meant that Ella sustained a 5 hour trip in the car today. Overall, she did really well. I was impressed. Sure, she had a couple of meltdowns, even one at the very end of the drive. But who could blame her since she had been sitting in the car seat for so long?

One highlight that I did not mention was when I went to feed her at 3pm. She fed orally via bottle and the rest was going in via g-tube when suddenly, the syringe and tubing came apart. Instantly 25ccs of formula spilled all over me! Needless to say, I spent the rest of the day sticky and smelling like Alimentum. Yippee…

Speaking of food, Josh forgot to mention that Ella took 50ccs via bottle yesterday in one session. That is a new record for her.

Many times throughout the day, we found ourselves stopping to thank God for sacrificing His Son, so that we might have life. In addition, we kept looking at Ella and seeing Him.

We are just so surprised that it is the Easter holiday in March 2008, and that we are the proud parents of a smiling Bun. It is so hard to believe that all of this is real. It doesn’t seem like it sometimes.

I will end with a simple poem that I ran across that I felt summarized my feelings about this holiday so succinctly.

The Cross

I know in life we all go through
A lot of hurt and pain
We need to think of Jesus Christ
On the cross with all our shame

For as our Lord was hanging there
With all our sin and doubts
Everything that we’ll go through
He bore as His blood poured out

And in the blood that flowed that day
Is forgiveness from every sin
There’s nothing we can do or say
His blood can’t cleanse within

Oh the pain that He went through
In suffering on His own
For even the Father turned His face
And He was left to die alone

We could never imagine the anguish
Of Jesus there on the cross
He lived for us; He died for us
And all we did was scoff

Nothing we could ever go through
Can ever be compared
So next time when we’re feeling down
We should go to Him in prayer

For He will understand your pain
For He has felt it too
He knows the road your traveling on
And He will walk with you

© By M.S.Lowndes

Posted (jooosh) in All Posts on March-22-2008

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!