Mar
21
    
Posted (Tina) in All Posts on March-21-2008

Yes, who knew that a meltdown from Ella could be a good thing?

Ella had a pretty good night, but started stirring at 4am. Since I went to bed at 12am, that was not quite what I was hoping for. From that point until 7am, I was literally out of the bed every 5 minutes. I told Josh today that I liken it to Vegas. You never know…she might just go back to sleep and I could catch some needed zzzzs too, so I keep trying. This time, 7am was the start of the day.

She did pretty well, including 25ccs in her first bottle session and 20ccs in her second session. Again, we are just trying to get her to practice and get better suction each day, so she can get better. Practice does make perfect.

In the late afternoon, we decided to go to the grocery store. Since it is literally across the street from our apartment and the weather was gorgeous, we decided to walk across the street together and make a trip out of it. Ella did great on the way to the store and through 95% of the store visit. Towards the end, she started to have a meltdown.

She became sweaty and was clearly upset although I was not sure what was causing it. Initially, it just seemed like she wanted me to hold her, which would not work worth our arrangement. So, I increased her oxygen to 1 liter and let her cry it out on the walk back to the apartment. I could tell by her color that she was doing “ok”, but she was not happy.

When we got her home, I think her episode lasted for 30+ minutes. She was sweaty, crying as hard as she knew how to do, and was clearly trying to tell me that something was not right. It seemed that she had gas pains or something. I tried venting through her g-tube to see if that would provide relief, but it didn’t seem to work. In any case, she was not consolable which is so tough….especially after 30 minutes of her crying hard.

The good news is that we had scheduled for Nurse Michelle and her husband to come over for dinner (thus the trip to the grocery store) at 7pm. Well, Ella finally gave up at 6:30pm,shortly after I pushed a feeding via her g-tube. She does not normally sleep at this time, but she wore herself out.

Once our friends came for dinner, Ella was sound asleep and she stayed asleep the entire time. That might mean a rough night ahead for me, but it was so nice to have a few hours to ourselves. It was nice to have a nurse that cared so much for our baby girl and for us, come to visit with us…outside the hospital.

There are a few NICU staff that have visited us while we are local and it means so much. I think tonight emphasized how much we miss being around friends.

On this Good Friday, we commemorate the passion, the suffering, and death on the cross of our Lord, Jesus Christ. We praise the Father and thank Him for His son, who sacrificed His life so that we might have life eternally. And we thank Him for our baby girl and pray that we can grow and become the parents He wants us to be.



 
Mar
20
    
Posted (Josh) in All Posts on March-20-2008

“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.



 
Mar
19
    
Posted (Tina) in All Posts on March-19-2008

Ella slept great last night until 5am. From that point forward, I was out of bed every few minutes. I was very out of it, so I think I kept hoping that she would really go back to sleep so that I could too….oh well.

Josh was nice enough to wake up at 8am and watch her for a couple of hours until his work day started. This allowed me to catch some zzzzs.

Ella did seem a bit fussy throughout the entire day. At moments, it just seemed like nothing made her happy. I’m not sure if she was just overtired because at other times, she seemed like the happiest baby ever born.

Ella did pretty well at our first try of oral feeds at 12 noon, by taking 20ccs. After that, she didn’t seem too interested the rest of the day. The OT was here and confirmed that adding rice cereal and sugar to the bottle has seemed to help her take more via bottle. Also, he mentioned that we may want to get the next flow for the nipple. This is because he is thinking about thickening the formula even more and we will need a larger hole in the nipple to allow any flow (not because Ella is necessarily ready to swallow more flow). The thickening of the formula is what he thinks is making the huge difference.

Since we tried rice cereal solo for a few days and know that she does not have an allergy, the next step was to try messy bright orange sweet potatoes. It didn’t go great, but it went better than any of the rice cereal. That gives me hope!

Instead of the spoon, I also tried putting it on my finger and letting her take it that way too. She helped to keep my finger in her mouth. Since the sweet potatoes taste half way decent, I could taste them with her. I think it helped her to see me eating them too. I’m hopeful that she may decide that sweet potatoes aren’t that bad after all. As a side note, boy…those are messy!

We were able to set up an appointment with the physical therapist for next week. Ella has not had any PT since we left the NICU back in January. She needs it really badly. One of the top physical therapists here in Gainesville does not make house calls, but we have decided that driving to that appointment is worth it.

As much as feeding has been a challenge, I am sure the physical therapy exercises will be trying too. Ella is very weak, gets tired fast and begins to fuss anytime we make her work. I’m hoping we can learn good distraction techniques to make it seem like fun!

Please pray that Ella begins to take to oral feeding better and that she is gaining weight. We want to have a good check-up with Dr. Kays next Tuesday! Also, that her lungs are getting stronger.

Thanks for the continued prayer support.




 
Mar
18
    
Posted (Tina) in All Posts on March-18-2008

Ella got lots of beauty sleep last night so I caught up too…that was a nice change.

Although Ella slept a lot, she was fussy most of the day. She had moments where she was very happy as I captured in the pictures. But her overall mood for the day was not great.

For feeds, I could only get her to take 10ccs twice today, for a total of 20ccs via bottle. After that, she was not interested. I tried rice cereal again and she would have nothing to do with it. At this point, it is hard to tell if she doesn’t like the experience as a whole, or if she truly doesn’t like rice cereal. Since she has tolerated rice cereal for a few days and it does not appear that she has an alergy, we’ll probably be able to try something else soon. Either way, we’ll try to see if we can entice her orally again tomorrow!

Before it became too warm, I took Ella on another walk today. She was tolerant and lasted for 25 minutes. There were moments of fussiness, but I seemed to be able to appease her with the binky and/or covering her completely from the sun (she gets warm easy and it makes her sweaty and uncomfortable). I hope that we can stretch out the time longer and longer.

Nurse Janet had planned to come over this afternoon to see Ella. Unfortunately, her plans changed and she was unable to come over and hang out with us. But, she still called and offered to bring over lunch. That was so unexpected and so sweet. The food was incredibly good and we were just in awe over her generosity.

Janet was able to run upstairs real quick and take a peek at Ella. She confirmed that Ella is looking good. She embraced and held her and after a few seconds, Ella started crying…and not a little cry, but a hard cry.

So, Ella is definitely getting stranger anxiety. If you remember, Ella did the same thing to Nurse Michelle last week. I know it is a normal baby response to have a preference for a parent, so in some ways, it is good that Ella had this response. It demonstrates a developmental milestone. At the same time, it is a bummer. These nurses love Ella and she would always smile at them before, so it is a good thing and sad thing at the same time.

We’re hoping that tomorrow is a day of progress forward for the Bun. As I type this, she is resting peacefully.

This afternoon, I took the time to reflect back on some photos of Ella. Can you believe that this is the same baby? This was when she was only 10 days old.

It is just amazing to look back at her story. And the story continues to get deeper and richer, yet already looking back, it is hard to believe all that we have been through since her birth.

We are so thankful for Ella Renae. She is a true miracle and the Lord most certainly has plans for her life. We hope that she reads this story someday and has confidence in the Lord, knowing that she was created perfectly in His image.

Jeremiah 17:7-8
7 “But blessed is the man who trusts in the LORD,
whose confidence is in him.

8 He will be like a tree planted by the water
that sends out its roots by the stream.
It does not fear when heat comes;
its leaves are always green.
It has no worries in a year of drought
and never fails to bear fruit.”



 
Mar
17
    
Posted (Tina) in All Posts on March-17-2008

Ella slept well last night and woke up ready to celebrate St. Patrick’s Day.

All of us recognize the traditional icon of the day as the shamrock. I read today, “…And this stems from a more bona fide Irish tale that tells how Patrick used the three-leafed shamrock to explain the Trinity. He used it in his sermons to represent how the Father, the Son, and the Holy Spirit could all exist as separate elements of the same entity. His followers adopted the custom of wearing a shamrock on his feast day.” I had no idea of the meaning behind the shamrock, but it certainly gives me more motivation to wear green and celebrate the day.

The first feed of the day did not go well – – she had a major meltdown requiring extra oxygen. The second and third feed of the day went much better. We tried the bottle again with the most being 20ccs at a time. Again, not a large amount but at least it was done with a normal amount of crying and fussing.

Also, we tried rice cereal twice today. She did SO much better this time. Even though she did not enjoy it and fussed each time, that is a normal baby response to me. But getting so worked up that she turns purple/blue and requires extra oxygen is a bit over the top. So, thankfully she did not have an episode over rice cereal today.

The weather was beautiful today so I pushed Ella for a walk. I enjoyed the fresh air and sunshine immensely. I think she enjoyed the change of scenery too. Eventually though, she became sweaty and bored. It lasted for about 20-25 minutes, which is the longest walk for Ella so far. Hopefully, we can increase that over the remaining days in Florida.

She had lots of fun with her bath today, but I think she likes cuddle time afterwards the best.

We never heard back from Dr. Kays on which oil to add to her nightly feeds. Kind of a bummer considering that we were really counting on that ingredient to help her gain weight. She has been taking her full 550ccs, so we are hopeful that we will still see some weight gain on her next weigh-in.

Also, we did not hear back about her blood work. We are going to make the assumption that no news is good news.

She has maintained on 400ccs of oxygen since last Thursday without an issue. That is very exciting. We still have a long way to go, but the fact that we made some progress feels good. It simply means that she is growing and getting stronger.

The more we care for Ella, the more we realize that she simply does not adapt to change well. It can be something fairly minor and she notices it. Until she has been exposed enough and realizes that it is not a negative experience, she is skeptical and can get upset very easily. So the moral of the story: introduce new things very slow and be patient. If she melts down, wait and try again another time. And keep at it.

Thank you for the continued prayer coverage. Trying to stand away and be objective, this past year has been rough for us on many levels. We have a beautiful daughter to be thankful for, and as such He has placed an enormous responsibility on our hands and trusted us to take care of her. We need the prayer support for her and her health. Along with that, we need lots of prayer to remain obedient and lean on Him for daily strength.

Psalm 105:4
Look to the LORD and his strength;
seek his face always.



 
Mar
16
    
Posted (Josh) in All Posts on March-16-2008

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.



 
Mar
15
    
Posted (Tina) in All Posts on March-15-2008

Today was a big day for the Bun. She ended up having a bath twice, if that gives any indication.

The night included lots of interrupted zzzzs, so the day started at 7:30am when Ella decided that she had been in her crib long enough. By the time we made coffee, ate breakfast, gave Ella meds, tried to feed her with the bottle, and then fed her via g-tube, it was almost 10am.

Then, we all needed bathing. Time was ticking along quickly today and we needed to pick up a prescription for Ella by 12:30pm. The specialized pharmacy is across town and we needed to go to Sam’s Club too. So, we decided to take Ella with us.

We’re always nervous taking her out anywhere since there is a higher risk of her getting sick. But we had cabin fever so badly, we decided to go for it.

Overall, Ella was great. I took her in the stroller and Josh pushed around the cart separately and did the shopping. At first, she was engaged by the different surroundings and sounds. Then she just wanted to suck her binky and take a nap. She kept fussing for the binky and since it was busy, I was having a tough time accommodating her while trying to weave through the people. Finally, Josh needed a restroom break and we stopped in a corner. My creativity kicked into high gear as I crafted a solution for the Bun, as you can see below.

We were gone for about 2 hours on that errand, but it felt like a long time. Probably just because it was so much work taking her along.

Once we came back to our apartment, we had lunch and I left Dad and the Bun to head out again to the regular grocery store for the other half of the shopping list. When I came back and put it all away, it was already 5:30pm and time to prepare feeding Ella again.

I had purchased rice cereal at the store, upon recommendation from Dr. Sarantos. I grabbed other fruits and veggies that she suggested and will store them for future feeding sessions. When the time for 6pm feed came, I thought we should try the rice cereal first to gauge her response.

Unfortunately, Ella did not like eating the rice cereal…and we are not talking a small amount of dissatisfaction. It got her fired up. She really did not like the experience. We thought it was maybe that she hadn’t napped in a while or was too hungry and figured we could try later. We are talking the increased oxygen to 1 liter and she is purple/bluish and crying so hard. Fortunately, we were able to calm her down after about 10 minutes to take a decent picture.

Did I mention that by this time of the day, I had changed Ella’s poopy diaper three times? Seemed a bit looser than usual, but nothing really came to mind or caused concern. Finally after the fourth dirty diaper of the day, I remembered.

Dr. Sarantos stated that we could add a very small amount of sugar to Ella’s bottle feeds. So all day yesterday and this morning, we were adding sugar. But we did not have regular sugar. The only sugar in our cabinet was brown sugar. I googled infants and brown sugar to make sure that it was not a problem. When I saw that it is usually used in remedies to relieve infant constipation, I knew it was safe for her. However without realizing it, we had given her a laxative without meaning to! No wonder she went sooo many times today. Hmmm….maybe that is also why she had a blow out with Dad yesterday morning? It’s certainly possible.

After trying to feed Ella again with rice cereal this evening and having her completely melt down, we opted for bath time again. She had gotten so diaphoretic (sweaty) all over her body and this was the second time today that she bathed in sweat. I just had to put her in the bath again.

Fortunately, she liked the warm bath and shortly after I fed her via g-tube with her full belly, she went down for the night at 9:30pm. That is a bit later for Ella, so we are hoping this means that she will stay in bed longer tonight.

We praise Him for our baby girl. We ask for His strength and perseverance to make it through each day and give Ella just what she needs. We plead for endurance to make it through the feeding issues. We know it is important for Ella to learn, but it is so tough to be disciplined when you feel like you are torturing your baby.

We know He has a reason for everything and although we do not know His plan, we want to be obedient.

2 Corinthians 2:9
The reason I wrote you was to see if you would stand the test and be obedient in everything.



 
Mar
14
    
Posted (Tina) in All Posts on March-14-2008

It is the end of the week and we are happy for the weekend!

Ella was restless last night and I was constantly getting out of bed to tend to her. When 7am rolled around, Josh tried to give me a break so I could catch some shut eye before his work day started. About 15 minutes later, he came into the bedroom confessing that he needed my help: Ella had a full blowout all over her outfit, blanket, play mat, etc. Indeed, it was messy and I could see why he needed an extra hand!

Overall, Ella did well today. We had an appointment with the OT and worked on bottle feeding again. We were able to get her to take 35ccs over 40 minutes. It was the second session with the OT where he watched her feed. He commented that he does not think she has true oral aversion. He can tell that she wants the bottle. His diagnosis is that she is just having a tough time getting the sucking and swallowing technique down and that it will simply take practice. Between all her sessions today, she took 70ccs. This is a high amount compared to recent days, but we also added a very small amount of brown sugar to the formula. The sweetness seems to be working!

The OT thinks that we should try and thicken the formula the slightest bit by adding some rice cereal. Again, just the slightest amount to make the formula a touch thicker, but where it will still easily flow out of the nipple.

We were bummed to not get an update from Dr. Kays today. So, we still don’t know how dry she is or which oil to start adding to her feed. I guess we will try to get an answer again in Monday.

We are also trying to not make too many changes to food until we hear back. But we have been able to get the 550ccs in her each day, so hopefully she is still gaining weight.

Ella is starting to take notice of the cats which is fun to witness.

She did great last night and today on 400ccs of oxygen. That is a really good sign. We’re hoping that she can maintain this until we go to see Dr. Kays. I’m sure he will be happy to know that we have made progress in that regard too.

All we know is that we are in love with The Bun. She is so cute and sweet!

Thank you for the thoughts and prayers. They mean so much to us and definitely have an impact on our lives.

James 5:16
Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.



 
Mar
13
    
Posted (Tina) in All Posts on March-13-2008

Ella had a rough night of sleep, so we gave up and called it a new day at 6am.

During the day, she was in a great mood considering she had little shut eye. Our big project for the day was getting to the pediatrician.

We thoroughly enjoyed our visit with Dr. Sarantos. She is so sweet and knowledgeable; we feel so fortunate that she was nice enough to take on a complicated baby like Ella, even for the short term.

Most of the appointment focused on food strategies and Ella’s eating trends. She could not stress enough how much to continue to push through the tough times and get Ella to eat orally with the bottle. She spoke with such conviction, since this was a personal challenge for her with her CDH baby too. On the extreme, she talked about someone she knew that has a 14 year old son that still has his g-tube since he did not learn to eat when he was young.

We discussed ideas such as adding a little bit of sugar to Ella’s formula to make it more enticing. Not only will it add those few calories, but maybe it will make it more interesting for her. She did tell me that when it makes sense with Dr. Kays plan, I can try feeding Rice Cereal to the Bun. We are excited to take that next step and try it when the time is right.

Another mom that reads this blog suggested that we try placing Malox on the g-tube site in the gauze to help with granulation tissue build-up. Dr. Sarantos suggested that we try it; it certainly will not harm her skin. So we are excited to try that remedy to see if it will help with that issue as well.

We are still waiting to hear from Dr. Kays concerning the addition of oil to Ella’s food at night as well as the results from her blood work earlier this week. There is concern that she might be too dry and if that is the case, he may want to change her diuretics.

Whether it is adding oil to food, trying rice cereal or changing the diuretics, we want to make sure and only make one change at a time with Ella. If we get too aggressive, we know that Ella does not respond well to change in the first place. Along with that, if there are any negative side effects, we will not know what is causing the symptoms. For now, we are on hold until we hear back from Dr. Kays.

One change I attempted this afternoon was the weaning of oxygen. I felt like Ella gave Dr. Kays a fake saturation of 94 in the office the other day. And he wanted it higher because I know he wants to wean her (she has been at 500 since she first went on cannulas in mid-December). So while she was asleep and sitting at 100 today around 4:45pm, I weaned the oxygen down to 400, just to see what would happen. There was no change. For now, we are going to try it and adjust if necessary. We do know that the rule of thumb is 90 or above when she is awake and 95 or above when she is asleep. We will see how she does overnight and into tomorrow.

In the meantime, we are still trying to feed orally which is a huge challenge. Ella seemed to be interested in it initially, but I think that she is getting tired of the air issues that it causes. And although Dr. Brown’s bottle is the best for her, the real issue is how Ella tries to suck on the bottle. She does not latch on real well and really go at the eating. She might for a few rhythms, but quickly shifts the nipple to the side and catches her breath. It is hard work for her and not natural to breathe, swallow and suck at the same time. It is hard to explain, but she gets really frustrated and fussy with the oral feeds.

While I am doing this, I can tell that air is getting in her belly so while I am holding her, I will hook up her g-tube one-handed which takes major coordination. Then, I have to hold the syringe as low as possible in one hand while still holding her with the bottle and let her try to eat. This way, she is venting at the same time and the air in her belly can escape. While this is happening, sometimes the gas can get painful so she will push up the food from her belly all the way back into the syringe. Again, tough to coordinate all this on my own. If she decides to really pitch a fit, I have to ask Josh to intervene and turn up her oxygen.

As a mom it is really tough because I feel like I am torturing her. Every 3 hours, I have to feed her and try to convince her, distract her enough to try and get her to try eating orally. It will literally take up to an hour just to get her to take 20ccs. And you can tell it is directly from eating orally because if I give her the binky or stop making her work, she calms right down and regains her color and good mood.

Please pray specifically for Ella and her eating challenges. We need for her to gain weight and progress forward, but we also need her to learn to enjoy eating.

Her last meltdown of the evening occurred during the feed at 9pm. Once she calmed down and fell asleep in my arms, I could feel her breathing hard and deep. She was up and over my shoulder, so I could feel her chest movement and the breaths near my ear.

I stopped for a moment to praise God. My baby girl could not even take a breath when she was born. And here she was after her episode, breathing in and out, with all her cuteness.

Psalm 22:10
From birth I was cast upon you;
from my mother’s womb you have been my God.



 
Mar
12
    
Posted (Tina) in All Posts on March-12-2008

Yep, today was the first day that Ella tolerated her sunglasses.

We tried them a few weeks ago on a walk, thinking that it would help her eyes adjust. She would have nothing to do with them. Well, today she was feeling more adventurous. I put my sunglasses on to join her. We were having a great time.

Ella slept well last night and got up around 5am. Nurse Michelle came over for a visit this morning. We grabbed a coffee initially, just having some one-on-one time. Then, we returned so Josh could start work and stayed with Ella.

Normally, Ella is in a good mood, especially with her nurse friends. Today, Ella was crabby. She was fussy and was not interested in being held or entertained by Michelle. When she was having major meltdowns, I would take her into my arms and she would calm down within seconds. Michelle looked at me and said, “I think she is having a Mommy day”. Today is the first time that I have experienced a Mommy day. In other words, it did appear that Ella simply wanted her Mommy. That was a new thing for her and me.

We have been trying to get in touch with the physical therapist, but have not had success. Ella and I did play a lot physically today by just rolling on the ground, moving her legs, stretching, etc. We had a good time. She was smiling for most of it and I could tell when she had enough and was getting tired (it didn’t take much).

We took a later lunch break and drove over to our old apartment community. They called the other day to let me know that a package had arrived for me. I wondered who had sent a package to my old address. When Josh walked in to get the package, he was instantly recognized by the staff. Sara, the leasing agent we worked with in the past, greeted him and was so excited that Ella was outside in the car. She made a point to come outside and see Ella in person.

Unfortunately, Ella was not real happy from the car ride and her general mood for the day. So there were no smiles for Sara. But it was nice to see her and know that she has been keeping up with Ella’s progress via the blog. We had no idea. It was just a blessing to be surprised by someone who had such a genuine interest and concern for Ella.

Back to the package, it was a sweet surprise from four of my colleagues, who are truly my friends. Once again, another complete surprise for the day. It was so nice for them to think of me and send me a gift to let me know that they will miss working with me. I feel spoiled!

We did not hear back from Dr. Kays office regarding the oil for her nightly feeds nor the results of her labs. We are expecting that information tomorrow.

Also tomorrow, we are going to see Dr. Sarantos. We’re excited to see her since it has been a month and we are looking forward to discussing some ideas for Ella related to food/weight gain. We’re not looking forward to the synagis shot, but getting blood drawn is worse, so I guess we’ll take it without too much complaint.

We know that with each day that passes, Ella is growing and getting stronger. We sense that it is going to be slow, but steady movement forward. We are trying our best to remain focused on why we are here in Gainesville and why I placed my career on hold: to give Ella the best chance at life. That is the entire reason we came to Florida in the first place.

Please pray for us, as her parents, that we will continue to be refreshed for the journey. We are looking forward to the idea of going back home, but know that we need to be obedient through this season while we are in Gainesville. Some days though, it is tough.

Fortunately, we have a obvious reminder of Him and His love when we look at Ella. We simply need to focus on that truth and what He has called us to do…and give Him our worries and concerns.

We thank everyone for your support and prayers.