Ella had a great day.

She took a bath and got all cleaned up to see one of her favorite people, Dr. Kays. The best news: The Bun gained weight. She gained about 140 grams over the past week, bringing her weight to 11 lbs, 9 ounces. Dr. Kays wants her to gain weight at a rate of 15-30 grams per day. Most babies will gain 30 grams per day, but as low as 15 is acceptable for CDH babies. Since Ella averaged 20 grams per day, that pleased him.

He did want to discuss the strategy for further weight gain over the next couple of weeks. He asked what we thought she would tolerate the best: a volume increase, further calorie density, etc. After some discussion, we leaned towards making a change in the overnight feeding when she is asleep. The likelihood that she would notice any difference is minimal. He is checking with the nutritionist and will be contacting us, but we will likely add some oil to her feed at night. Even just 1 tablespoon of oil to her food each night would give her an enormous boost in calories which should result in weight gain.

We did find out about her labs from last week. Interestingly enough, her BUN was 28. It jumped a tremendous amount from the prior labs. Now, it is in a place where she could get too dry. So, he asked us to get labs before we left the building today, since we will not be seeing him for 2 weeks. Since she is on such a high amount of diuretics, her electrolytes do need to be monitored closely. If she is too dry, he may make an adjustment to her diuretics.

When we went to the blood lab, they had a tough time drawing blood from Ella’s veins. This could be another indication that she may be too dry. Hopefully, they drew enough to test her electrolytes, so that Dr. Kays can do his analysis. It would not be fun to have to make a special trip just for that purpose.

Ella did have granulation tissue around her g-tube again this week. The only thing you can do is keep it clean and dry. We do our best at that by keeping gauze around it. It is frustrating that it continues to return each week. I’m hoping it will decrease over time, but have accepted the fact that it may remain until she no longer has a g-tube.

Dr. Kays always tries to give Ella the benefit of the doubt while checking her saturations. I think he is secretly hoping that he will be able to wean her oxygen. Unfortunately, she only gave him a 94 while he was checking. That is definitely not good enough to even consider weaning. But slow steps downward will eventually be another milestone for Ella.

All in all, a great day for Ella. We thank the Lord for our precious baby girl.

Today was uneventful which is a blessing in our eyes.

The Bun slept through last night only waking up a handful of times. Most of the day, she was in a great mood. We took a 15 minute walk and she tolerated it. We were able to get 550ccs of volume into her throughout the day via g-tube. We are hoping this translates to weight gain when we visit Dr. Kays tomorrow.

The only drawback is that she does not seem to be interested in feeding via the bottle. Our high point was 120 ccs last week and now, she is only taking 10-20ccs at the most each time. Sometimes, she is clearly not wanting the bottle at all. The intake over the past few days via bottle has been between 20-40ccs. I can’t figure out what has changed over the past week, but clearly, something is different.

I’ll be excited to see the pediatrician this month, so I can discuss a food strategy with her. I want to see if there are other things that I can consider giving Ella orally since she is 7+months old. I think having something with texture and taste would be good for her and she would like it. We simply have to tread lightly since it could cause her other issues.

She was ultra smiley today as we spent time together. That smile is healing. It reminds me of what is important. It reminds me that we have been through so much, yet there is so much more to come. And that He has a plan.

1 Peter 4:12-13
Dear friends, do not be surprised at the painful trial you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.

Today was a nice day with the Bun.

Ella had a restful night of sleep. We gave her a bath today and went outside for a 15 minute walk since the weather was perfect. She seemed to tolerate both well. In general, she was just in a good mood. Also, we decided to put her in the car while we ran some errands. The more we can get her used to the car, the better.

While I stayed in the car with Bun, Josh went upstairs to the pediatric floor of the hospital. A friend that we met in the NICU last December had her son readmitted. Initially, his CDH was less severe and he was only in the NICU for about 1 month, but he returned due to some complications with scar tissue. He had surgery to repair his intestines and bowels the other day and is in recovery on the pediatric floor.

Unfortunately, it is just as tough for her as it was for me at the beginning of February. The nurses are not attentive and you cannot leave your child because it is not a locked down unit. So while her husband and 2 others sons are 2 hours away, she is trying to live in the hospital room with her baby boy and hope that he heals well.

It is that lonely feeling where you feel like you have no support, yet you are in the hospital. It is such a culture shock from the NICU.

We felt led to visit her in the hospital and bring her a bag of goodies, just like some friends did for us. If you remember, please pray for her and her baby boy (Hope and Jayden).

Again, we have only been home with Ella for 29 days total. Yet driving through the parking structure, it had felt like an eternity since we had been there. I was happy to have that feeling. I do not miss it, that is for sure.

We have been doing well with her food intake this week. Although her oral skills have not improved, it is a great milestone to be intaking 550ccs each day. She is still retching and having some discomfort, but it is tolerable. Please pray that she will have gained weight when we go to see Dr. Kays on Tuesday.

I wish the weekends just continued and continued. It was nice hanging out as a family today, just the three of us.

We will miss the Grandmas – – they were a great help with Ella and to us by cooking, cleaning and just giving us support and love during the past 2 weeks.

All of us set our clocks forward today and it made me reflect on how in an instant, we will not be fast forwarding an hour, but months or years. I’m hoping and praying that these initial days of her life are the toughest ones for Ella and that as each day passes, her health issues will become less and less.

Nahum 1:7
The LORD is good,
a refuge in times of trouble.
He cares for those who trust in him.

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. =)

Yep, you guessed it. The state of Florida had a day of severe thunderstorms and tornado watches. When Josh woke up and watched the news, concern set in.

The Weather Channel showed that we had about an hour before the storms truly hit Gainesville. The reports indicated that there was already one tornado just east of Tallahassee and 2 people had died. They were urging people to take shelter since the storms were going to be heavy.

Looking around in our second floor apartment, there is not a real safe area to take shelter. In addition, the last time we had heavy storms, the power went out. Fortunately, it came back on within an hour. But remember that when this happens, we have to scurry to hook Ella up to a portable oxygen tank.

So knowing that a heavy storm was approaching and that if we felt in danger and needed to leave, that would not be an easy task with Ella and her garb.

Our best idea was to go to the hospital. It is close, has a basement and would have oxygen and anything else that Ella might need.

Once we decided, we were on a mission and began running around the apartment to gather all our necessary items. We made it to the hospital just as the storm began to get heavy.

We hung out in the atrium of the hospital. Without knowing it, they have free live music on the first Friday of each month. So, we ended up sitting in the perfect spot. They played jazz type music and Ella just loved it. She ended up falling asleep as they ended their presentation.

With wifi available, we did our best to work with all the craziness. Fortunately, we were both able to get our obligations completed. For me, it was my last day at work…how strange.

We ended up coming home around 5pm, safe and sound. What an experience…

Reflecting back on the whole day, the highlight of the hospital visit was a lady named Eve. From the moment that we walked into the atrium, Ella was alert and checking everyone out. She spotted a lady at the coffee stand. From across the room, they exchanged a gaze. Next thing I know, she walked over.

Josh did the talking as I was holding and entertaining Ella. Eve expressed to us the beauty that she noticed in Ella. She confirmed the sweet spirit in our baby girl.

We told her about our journey from Colorado and how we spent 6+ months in the NICU. All in all, we simply shared that Ella is a miracle and that it has been an amazing experience. It ended by us sharing the blog, so she could read about our entire story, if she wished.

She mentioned that she would pray for us and that she would share our story with her church, so that others could pray for us too. By the time we settled into the atrium and logged onto our computers, she had already posted a comment and subscribed to email notifications!

I am not giving it justice by my description, but the entire experience was almost surreal. Here a complete stranger decided to walk up to us and ended up being blessed by Ella and her story. But more than that, we were so blessed by Eve and the comments that she had to make about our girl. Josh kept affirming that if the encounter with Eve was the sole reason for us being prompted to go to the hospital, then it was all worth it.

It is amazing how the Lord can use our baby girl each and every day to bless others and remind us of what is truly important.

Exodus 9:16
But I have raised you up for this very purpose, that I might show you my power and that my name might be proclaimed in all the earth.

UPDATE 3/7/08 5:00pm EST – We’re back in our apartment and all is good. We’ll give a full update on the new post tonight.

UPDATE 3/7/08 11:00am EST – We’re not in Kansas Toto, but you’d think we were. Just wanted to let you all know that we’ve taken shelter at Shands (the hospital) to wait out the storm. Just figured we’d be safer here than on the second floor of an apartment. Some of you called to ask if we’re ok. We’re totally fine, just figured we’d play it safe here. Latest radar is here.

Ella had a rough night, even scratched her forehead pretty good grabbing at her cannulas, but finally decided to sleep solid from 5:30am – 6:30am and then until 7:30am. So, those last 2 hours of beauty sleep carried us both through the day.

She had a good day complete with a bath and time playing with Grandma West. One thing that was new today was a belated Christmas gift from Grandma West – – a portable DVD player with Baby Einstein videos. It is great because it plays DVDs as well as CDs and can be strapped to her daytime crib or be placed in the car. Today, we just tried it in her crib and she really enjoyed it. I’m excited to try it in the car. We always have such a tough time getting her settled, so maybe it will provide a nice distraction.

The OT came to see Ella today and gave me a few tips to try and work on to strengthen her feeding. Most had to do with position, like placing a finger under her jaw, to stimulate better sucking. Today, she took around 60ccs via the bottle at various times.

We still have episodes each day (where Ella gets so upset and turns a blue/purple color). The one tonight lasted for a total of an hour. Looking back on this one and others, it almost seems like it is not a sole factor that is causing them. It is like a perfect storm of events, pain, tiredness, etc. and she just can’t handle it anymore. Either way, they are still so tough to endure emotionally. I look forward to the day when she can verbalize what is hurting her. Right now, it is an ongoing mystery.

Tomorrow is my last day of work. I’m glad it is so that I can refocus my attention back to Ella and close that chapter of my life. It has been tough to have an allegiance to both at the same time. There are people that I am really going to miss from work, but hopefully I will be able to maintain relationships with those away from the work environment.

When Ella fell asleep in my arms tonight after her episode, I just stared at her face. I could feel her chest moving up and down, a bit labored for breath. It is such a miracle that she is here with us and that we get to enjoy her.

I still don’t have a sense what the Lord has planned for her life. But He must have something amazing in mind. I reflect back on everything that she has been through in her short time, and all odds were against her. And yet, she is here with us. We’re so thankful.

Psalm 52:9
I will praise you forever for what you have done;
in your name I will hope, for your name is good.

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

Ella was uncomfortable for most of the night and we were hanging out together. At 12:30am, I gave her some Tylenol because she felt warm. As the night progressed, her fever got worse and she became fussier. Instead of trying to fight against the inevitable, we went out to the living room area at 1:30am. We were up most of the night and into the morning.

At 6am, she had a temperature rectally at 100.9, but this was after I had already been administering Tylenol a couple of times, so she was probably warmer than that initially. Also, she had a melt down requiring a boost in oxygen. After that, I think she was so exhausted from the restless night, that she finally fell asleep at 6:30am and slept for an hour. I slept on the couch near her travel crib and that was the only true stretch of sleep last night. I savored every minute.

Grandma Eusey left today and Grandma West joined us. So fun for Ella to have time with both of her grandmas!

When we went to the doctor, we had to stop by the lab and get blood drawn. Hopefully, we will hear the results in the next day or so. That process is always traumatic for Ella, but she did pretty well. She was upset, but it made it better that they were quick and efficient in drawing her blood.

We weighed in Ella, but unfortunately, she lost weight. She was 11 lbs, 4 ounces. If you think about it, we have had feeding issues for awhile now. I think it is because we have not even been able to get all the 550ccs into her little body each day.

The good news is that we are making progress with her feeds. We have gone through another day where we were able to meet the goal of getting Ella to eat 550ccs. The past 2 days have been successful – – this is the first time since the latter part of January, so we feel it is a great accomplishment. We are hoping that we can meet the goal of getting 550ccs in her each day and that it will help her put on weight for next week’s appointment.

Ella had more granulation tissue around her g-tube, so Dr. Kays had to burn it off. Always fun to watch! I’m hoping that this decreases over time.

My favorite part of the appointment was watching Dr. Kays trying to get Ella to look and him and flash a smile. She wouldn’t give him one. Also, he asked me, “How many days has it been since you were in the hospital?” I replied, “Oh, I don’t know…” Immediately, he raised his hands and waved them in the air, “Yeeeaaahhhh! We’re making progress!”.

Back in the NICU, whenever we would see Dr. Kays at bedside, we would remind him of how many days it had been since we started the journey, especially as it continued and continued. So when he asked me how many days it had been since we left the hospital and I didn’t know off hand, he counted that as great progress. He reminded me that albeit slow, we have made progress. “I mean, look, we are not in the hospital”. I told him that I appreciated his perspective, for reminding me that we have made great progress.

After the doctor appointment, we were able to see Jordan Brantley. She looks so amazing. When we were weighing in together, she tipped the scales at 17 lbs. She is not on oxygen and looks happy and alert. You would never know that she ever had a rough beginning in the NICU. And it was so great to see Julie and Mary Lou Brantley. They have been a source of support over these months and although the visit was brief, it was so nice to see familiar faces.

Dr. Kays is right…we have made progress. Just scrolling to the top of this blog and looking at Ella’s photo in the upper left hand side is a clear reminder of the progress that we have made over the months.

We’re so thankful that we have the Bun in our lives. We just love her so much and look forward to future days where she will be feel better more of the time than not.

Psalm 69:30

The Bun has been drooling so much from teething that it actually formed a mustache. I wish it was from the frothy foam of drinking too much formula, but maybe that will come some day.

Ella slept solid for a handful of hours last night, but was on/off from 3am forward. I gave up at 5am and called it a new day. Boy, this has been tough to finish up work with such little sleep. It is a good thing that moving forward, she will be my only focus while we are enduring the sleepless nights.

I think that Ella is fighting allergies or a cold. She seems more snarfy and congested. Throughout the day, she is coughing and retching from her own secretions. Today that simply led to a fussy Bun. It is hard to blame her when she is not feeling well.

The Dr. Brown bottles did work the best for Ella – – that became evident today. She took 120ccs via bottle throughout the day!!! Since the gas was so much less, I was able to bottle feed until Ella was tired (typically 20ccs at a time), then pause and vent via her g-tube. (In prior days, we had to vent simultaneously because there was so much air in her belly). So, we are making progress.

Also regarding bolus feeds, we have worked our way back up to 70ccs each feed, for 5 feeds per day. It worked yesterday and today. Starting today, I took the entire amount of 70ccs and bottle fed until she was worn out. Then, vented her g-tube and gave her the rest via g-tube.

We are hoping that Ella can stick with this schedule. She maintained 70ccs per feed for so long in the NICU, but then had such a problem since the last week of January. At this point, I am not sure we ever found a clear answer, but at least we are going the right direction.

When we go to see Dr. Kays tomorrow, we are looking forward to seeing the Brantleys. The last time they were in Gainesville on November 6, 2007, we had lunch with them. Jordan, their baby girl, was one of Ella’s roommates that was born 1 week after Ella on August 1, 2007. It will be exciting to see how big Jordan has become and for them to see Ella. It will be the first time that they will have seen Ella outside the hospital.

One highlight today was taking a bath. Although we take them frequently, Ella decided that she was going to have fun today. Plus afterwards, I left her in her robe and she had a great time just hanging out with me and playing with her toys.

Today was the last day that Grandma Eusey could visit this trip. She will be heading back to San Diego tomorrow morning. But tomorrow night, we have Grandma West coming. Once again, good to have the Grandmas visiting the Bun and help out while I am concluding work. We need to pray for safety in travel for both Grandmas, since Florida is supposed to get heavy storms tomorrow.

This picture below is just so sweet. She feel asleep in Grandma’s arms with no concerns…just relaxed. I think I am already learning lessons from my little girl.

Yes…Bring Your Own Bottle. To heck with what the OT said. We tried the Playtex Vent-Aire and the Dr. Brown bottle.

At this point we’re thinking the Doctor got it right. We’ve only had a couple feeds with this bottle, but it appears like a lot less gas is being swallowed. Time will tell, and so will Ella.

We increased Ella’s volume of food today (70ccs per feed), and she took it pretty well, which is great. We did see some more retching, but not an increase that would cause us concern. As you can see from the picture above, our girl is getting pretty serious about making sure that bottle stays in her mouth.

Ella was pretty restless last night, which made for another sleepless night for Tina. Along with the regular scenario of a baby not sleeping through the night, it’s more complicated with Ella. For example, many times she ends up inadvertently removing the cannulas from her nose. Since she is so reliant on oxygen, it’s a matter of survival, not just an inconvenience. This is just one example of why the nights are so challenging. Ella stayed up a bit later tonight so we’ll see how well she does.

Although it was short, the Bun did get to see her “Aunt” Marla today. Always nice to have visitors.

Our next appointment is Tuesday with Dr. Kays. She’s having blood work done and we’ll be discussing the progress of her feeds to see if she has gained weight and / or if any changes need to be made.

One thing for sure…Ella is still cute as ever.

Sleep well tonight Bun…sleep well.