Nope, I’m not talking about ice cream. Last night was rough for Ella…and Mom. We got very little sleep.

Unfortunately, the lack of beauty sleep led to a cranky Bun throughout the day. She sounds congested again, so she may have caught another cold.

Ella did take lots of little naps today in between trying to work on her feeding. She took around 90ccs total out of the bottle. She has such a desire to feed via the bottle and is doing really well getting the hang of it. If it weren’t for all the air she swallows and the grief it causes her each time, I think she would be further along. Even though we vent her g-tube at the same time, it does not eliminate the episodes of pain that she has to endure.

When we get a chance to go to the pediatrician next month, we are going to ask about other foods we can introduce for Ella. We have to be careful because of her fluid issues, but it just seems that the oral stimulation from her taste buds is so enjoyable to her. Maybe foods with more texture could also provide more calories and not cause the gas pains.

We were supposed to have an appointment today with the OT to work on feeding issues, but the therapist was ill. But we did discuss the strategies of what we have been doing. For example, I asked about other types of bottles. He told us that the one we are using is one he normally recommends and he doesn’t want us changing it on Ella while she is making forward progress. We are hoping that we can get some more hands on training next week.

I’m excited that it is the weekend. This means that I might be able to get more sleep!

We pray that Ella’s weekend will prove to be restful, that she will gain strength and that her health will improve. We’re so blessed to have our little Bun.

Psalm 119:148
My eyes stay open through the watches of the night,
that I may meditate on your promises.

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

The Bun had a great night of sleep last night. She slept from 8pm until 4:30am (8.5 hours) before she stirred. So although the schedule isn’t great for me (she has feeds starting at 10:30pm and meds due at midnight), I can’t blame the Bun when she is willing to sleep 8+hours at a time.

This morning was a bit rough…

…but the afternoon was better.

Although we still encountered the same general feeding issues today (coughing and retching), the biggest milestone today was that she took 70ccs from the bottle in only 2 sessions. I can’t tell you how impressed we are at her progress. I am sure that she will hit plateaus along the way, but I can’t believe that she is even interested in feeding orally. The last feeding session today truly went off without a hitch – – she didn’t cough or retch once and then just fell asleep. It was just perfect and gives me so much hope that someday she will be able to do it all orally.

For some reason, Ella was more sleepy today than normal. She took a 4 hour nap. This is about the same time last week that this happened. As some of you suggested, maybe they are just growth spurts that require the extra beauty sleep.

Grandma Eusey has been having a good time with Bun too. More than that, we have really appreciated the help with preparing meals, cooking and cleaning. It is nice to have family support!

We did not have a chance to try a walk today because it was very cold. I’m hoping the weather improves so that we can try again soon.

And with each passing day, we love the Bun even more. We keep reminding ourselves that He has a plan and that we need to trust Him that all the details will fall into place, according to His will.

Psalm 31:19
How great is your goodness,
which you have stored up for those who fear you,
which you bestow in the sight of men
on those who take refuge in you.

Ella had a great night of sleep, but for some reason, was fussy most of the morning. Then she realized that it was almost time to go see Dr. Kays, so she opted to behave for a bit (she always puts on her best for him).

Our appointment time was good. We went ahead and changed out Ella’s g-tube for a smaller one. Actually, Josh went ahead and changed out the tube, with the nurse practitioner supervising. Yikes – – that is not something for me, so I am glad that Josh doesn’t mind doing it!

The Mic-Key g-tube has a balloon inside that is inflated which keeps it in place. Before, it was inflated with 5ccs, so today we decided to inflate it to only 3ccs.

If you remember, the radiology test recently showed that the balloon part of the g-tube might have been occluding the antrum (lower portion of the stomach closest to the pylorus). Since her feeding issues seem volume related, we are hoping that the smaller tube along with the smaller balloon will give more room in her belly and will therefore have a positive effect for her feeding issues. Only time will tell.

Also, the nurse practitioner had to burn off the granulation tissue. Thankfully, this is not painful for Ella. I think it is more painful to watch!

We are scheduled to see Dr. Kays next week. If the feeding issues do not improve, we are considering an increase in her current medication, Reglan. Reglan increases muscle contractions in upper digestive tract. This speeds up the rate at which the stomach empties into the intestines. Based on her weight, she could take more of it.

The focus is on the feeding issues so much not only because of the inconvenience and discomfort to Ella, but also because she weighed in at the same weight, yet 2 weeks has passed. It is common for CDH babies to have a tough time with weight gain, so I should expect this challenge.

When I thought about it today, it makes sense because Ella is supposed to take 550ccs each day and we have had a tough time meeting that requirement lately with all her feeding issues. Also, she is only on 24 calorie food so the density might need to be increased. But right now, we are trying to identify what is causing discomfort and retching before we look to change the food in any way.

This afternoon when we returned from the doctor, Ella was in a great mood. She was so smiley! It was nice to see. Who knows, maybe the change in g-tube really did make a difference to her. Again, only time will tell.

Tonight there were severe thunderstorms in central Florida and a tornado watch. When we were hanging out, all of a sudden the electricity went out. The drill that Josh went through the first night that Ella was ever home with us (where Josh thought there was an emergency and Ella just needed her diaper changed), paid off. Immediately, Josh jumped up from his chair where he was eating dinner, and ran into the bedroom to grab the portable oxygen tank. He successfully transitioned Ella’s oxygen within a matter of seconds. Thank goodness!

Seeing Ella in such a great mood makes me long for the days when Ella is stronger. When she is feeling good, she is just so happy. We just need to keep holding on to the hope that she will grow and get strong.

One last thing to share: God provided a tremendous blessing while we were exiting the office of Dr. Kays. Another CDH patient was there for her check-up. She is 9 years old and she looked great with her ponytail and big smile. We spoke with the family briefly and it was so great to see this girl grown up. You could barely notice the scars across her neck from ECMO.

Also, it was neat to experience a 9 year old CDH survivor that was looking at Ella with eyes of compassion and sympathy. It was as if there was an instant connection since they had both survived the same birth defect and had matching scars on their necks.

Immediately, Josh got teary-eyed. We looked at each other and knew that it was a specific arrangement by Him to be blessed.

Galatians 6:9
Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.

Ella had a great night of sleep last night, thus Mom had a great night of sleep. She slept solid until 5am, I changed her diaper and repositioned her and she went back to sleep until 6:30am. That was fantastic for her!

Today was a tough day for me personally. For the past 6 weeks, I was using my remaining maternity leave to be with Ella. This morning, I gave my 2 week notice.

For some, it might seem like a dream come true. However, I have never pictured myself being a stay-at-home Mom.

The last several weeks we have prayed about the right decision. Finances are tough being out in Gainesville to begin with much less having me not provide income.

But the prayers kept confirming that regardless of my own self desires, the right decision was to quit my job and stay home with Ella for a season. We feel that she needs this in order to thrive.

I have been at my job for 6.5 years and it is a great job, thus it was tough for me to quit.

Grandma Eusey was around to help out with Ella, so I could properly give notice. It helped that Ella was full of smiles. It was just fun to be around her. As I was working, I could see them in the background having a good time.

This is why it was so strange when things turned this afternoon. Ella’s endurance started to get low. Everything seemed like it was tough for her, so almost anything made her fussy.

We tried oral feeding again. Several times, she was not interested. But throughout the day, she took 40ccs again. It just seemed like it was a lot more work and more sessions to get the 40ccs. That’s okay, it is still great progress for her.

In the afternoon, we tried another walk. It was okay initially and then she started to cough. Once she was not able to catch her breath, she became frustrated and inconsolable. After having her turn a lovely blue/purple shade, we turned right back around and headed for the apartment. We hope to try again soon.

By the evening, she was overtired and was not consolable. Josh was working with headphones on in the other room and had to pause several times, just to check and make sure everything was okay. She was so upset and was crying so loud, the oxygen sat at double the normal amount for most of the afternoon and evening (1 liter).

Today was a day of highs and lows emotionally. It would warm my heart when she was smiling and having such a good time. Yet, quitting my job and dealing with her numerous meltdowns was tough.

As I end the day, I am reminded that although things look seemingly impossible and sometimes bleak from my perspective, my job is to trust and obey God who ordains everything.

Thank you for the continued prayer support for all three of us.

Psalm 37:5
Commit your way to the LORD; trust in him.

Wow, can you believe that the Bun is 7 months old today? It is hard for me.

First, it seems strange because she has only been home with us a total of 17 days. Second, she is just so petite for her age. She is still wearing size “3 month” or “3-6 month” for her daily fashion statement. Finally, this is the Bun we are talking about…the one that has been through so much. Sometimes I just sit in awe. Only time will truly reveal all that God has planned.

Today was so much better for Ella. It started off last night when she slept a solid 6 hours without stirring. She has only done that a few times before when she was feeling better. Then, today she was up most of the day versus earlier this week when she was sleeping 4-5 hours in the middle of the day.

Josh took care of her most of the day while I ran errands with Grandma Eusey. While Ella enjoyed her time with Daddy, we stocked up on food and goodies for the next 10 days since we will be spending most of our time in the apartment.

Today, Ella took another 40ccs via bottle (20ccs one time, 10ccs two other times). That is so amazing!!! Even though she coughs and retches sometimes, it is reassuring to see her come back to the bottle within a few minutes and desire to eat more. We just hope that we can continue each day and slowly have her take more and more.

We are excited to see Dr. Kays on Tuesday. We are curious to see if her blood lab work has continued to improve (we found out that her BUN on 2/12/08 was 19. Ideally, we want to see 20 or higher). Also, we need some maintenance on the g-tube – – some granulation tissue has surfaced again and needs to be burned off.

It was a gorgeous Florida day, so we went for another 15 minute walk around the community. Only towards the very end of the walk, she decided to become fussy. Although in her defense, she got the hiccups and wanted to be held. I think I would want to be held too.

It was so nice to see Ella smile and feel like herself today. It was just the refreshment we needed after a string of rough days in a row.

Thank you for the prayer support. We thank Him for our journey, the good days and the tough days. We know He has a plan and look forward to seeing Him reveal His glory day by day.

Psalm 8
O LORD, our Lord,
how majestic is your name in all the earth!
You have set your glory
above the heavens.

O LORD, our Lord,
how majestic is your name in all the earth!

Today was a better day for the Bun, although it started out rough.

She woke up several times during the night but at 5am, she decided that she would not go back to sleep. I asked Josh if he would be willing to get up with her initially and I would relieve him in a couple of hours. I was so exhausted.

At 9:15am, I finally woke up. Yeah, that was a little bit more than 2 hours. Anyway, I came out of the room to check on Josh and the Bun and noted that Ella’s fussiness had continued. Poor Josh looked so worn out. She has had a fever the past couple of mornings and has been fussy and inconsolable.

About 10:30am, Nurse Michelle decided to stop by and visit. She was magical for Ella. Here she had been fussy since she woke up at 5am, but decided to behave for her visitor. Then out of nowhere, Michelle offered to watch her if we wanted to run any errands. Josh barely let Michelle finish her sentence and said “Yes!”. So, we went for a drive to Toys-R-Us to buy some stuff for Ella. That was the first time that we both left the house and left Ella in the care of someone. It was so nice just to get a break and some fresh air for that hour.

When we went to Toys-R-Us, we bought Ella a Vicks Warm Vaporizer. At this point, she has been so congested that we feel desperate to try something. We are hopeful that it will work.

Another thing we wanted to try is taking her on a walk again, except this time, I wanted Josh’s help. So when the time was right, we took her for a short 10 minute walk. This time, she did fine. I was so excited because I want to go on walks with her. A good reminder for me…try changes slow and steady for Ella.

Just to help with the stroller rides and car rides, we pulled up her car seat into the living room where she has a view of the TV. As much as we can, we are going to set her in it so that she can get used to it more and more.

Once we came back from the walk, I told Josh that I wanted to try feeding her orally again. Even though the OT wanted me to wait for the next appointment and a special bottle, I felt like we should just try. Even just dipping the bottle nipple and letting her get used to it in her mouth.

Although it took a very long time and there was coughing and retching spells a few times, we had 3 separate feeding sessions throughout today. The first time, she took 20ccs. The second and third times, she took 10ccs each. So, a total of 40ccs!!! That is a huge first step to feeding orally, so we are very excited.

When Ella is in a good mood over the next several days, we will continue to try it. The only adverse side effect is that she did get a lot of air in her belly, so we had to vent her quite a bit to alleviate the symptoms.

We did notice that when we did not feed her (like the extended time that Michelle was visiting), she was in a great mood. If we did not have to feed her, she would be feeling marvelous. But feeding her when she is awake, whether via bolus or the food pump, causes some type of discomfort for her and puts her in a bad mood. So we are still not sure what to think about the feeding issue, but hope to gain wisdom in the coming days.

Grandma Eusey made it to Florida this evening. But since she arrived, the Bun has been asleep. She is asleep as I am typing this post. I just can’t help but watch her sleep with her little chest moving up and down and reflect on the miracle of our baby girl. I can’t believe it.

We pray for a restful night for Ella and that she would continue to gain strength. Thank you for the continued prayer support – – it means more than you will ever know.

Last night, Ella did not have a restful night of sleep. Every 15-30 minutes she was crying between 12am and 5:30am. Finally at 5:30am, I gave up and called it a new day.

Ella continues to be lethargic and not much like herself. Her teeth continue to plague her at all hours. It is tough because the teeth do not even appear to be breaking the surface of the gums which means that this stage could last awhile.

Today, she had her first appointment with the occupational therapist. Unfortunately, she was tired and cranky so we did not make much progress. The main focus of the therapy is to get her to make progress on oral feeds.

I did learn some tips/techniques from the OT and discussed the upcoming week. I tried to advocate that Ella needs more than 1 session per week, especially at the beginning. Although I can learn from the OT and implement throughout the week, it is tough to grasp the best practices from the OT if Ella is fussy and not in a great mood. So most of the request for frequency is to make sure that the OT can catch Ella when she is in a good place, so we can optimize the time.

Our homework for this upcoming week is to dip the binky in formula as much as possible to get her used to the taste. When we tried this today, she liked it. The OT talked about bringing a small bottle with a slow flow nipple to the next session so we can slowly introduce oral feeds. When we see Dr. Kays on Tuesday, we will verify with him how much breast milk can be used for the oral feeding (since we received a donation from Par’s mom recently!). Since Ella is so marginal, we feel the need to ask him and devise a plan with his input.

This evening, Josh and I got the sense that we should lead the forward progress when it comes to Ella’s oral feeding. So we started by dipping the regular bottle nipple in the formula and letting her get used to the bottle. She mostly moved it around in her mouth. A few times, she did suck and swallow the formula which was great. She probably took a total of 2ccs over 30 minutes, which is a minor amount, but significant for her. Along with her success, she did retch a couple of times which was tough to experience. We hope to try this each day when she is in a good mood and see if we can make further progress.

Unfortunately, there are no services that come to the home and focus on the physical therapy, but it is something that Ella needs. She definitely has catch-up to do when it comes to her physical skills (this is reasonable considering that she was in the hospital for 6.5 months, mostly laying in bed). We plan to contact the OT therapist from the NICU and ask for her recommendations. Although we will have to get in the car and go for treatment, we know it is a really important component for Ella’s recovery.

Feeling the love today for Josh was getting together with Matt for lunch (friend from NICU 2). Him and his wife Abby have been amazing prayer warriors for us. Also, when we were readmitted to the hospital after the initial NICU experience, they delivered presents for Ella, baked goodies and a pillow for me (they knew that the pillows at the hospital are not great!). All in all, we feel so blessed to have met them in the NICU 2.

Feeling the love today for me was all about Nurse Marla coming over. This afternoon, she came over and played with Ella. It is fun to watch them together because they both love each other so much – – she is definitely Aunt Marla to the Bun.

While Josh was working, Marla watched Ella and gave me the permission to take a nap or get out of the house for a bit. Although sleep deprived, I opted for the freedom and fresh air. I took a 1.5 hour break by grabbing a coffee and getting a manicure & pedicure. It was so nice to escape!

Along with the babysitting, Marla brought over dinner for us – enchiladas and spanish rice as well as muffins for breakfast. We had the dinner tonight and it was very good. There is enough for leftovers tomorrow too! She went through her movie library and loaned us some movies to watch. Finally, she brought Ella lots of presents which was so sweet (everything from bunny ears for Easter, a flower headband, a new onesie, some books, interactive musical piano toy, etc.). Honestly, I was overwhelmed by her generosity. I tried to express my gratitude but I am not sure if she realizes just how much that meant to both me and Josh. She is going to come and see Ella this upcoming week too – – we’re so excited.

For Ella, feeling the love was visiting with Aunt Marla plus getting an email greeting from Par. Click here to listen. It is hilarious!

So although Ella did not have a great day, we were feeling the love. The support of those close-by along with all the posts and prayer coverage by many made such a difference to us.

Thankfully, Grandma Eusey is planning to visit tomorrow evening and will be around for 10 days. It will be great to have family support to further help us during this tough time with Ella.

Once again, thanks for all the support and prayers.

1 John 4:12
No one has ever seen God; but if we love one another, God lives in us and his love is made complete in us.

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.

You would not know from the photos, but Ella had a rough day.

Her fussy behavior continued along with sounding more congested. Again, just not feeling that great.

To make matters worse, feeding did not go well. She seemed to be retching a lot today. A couple of times it was directly related to food. Other times, it would be 30 minutes or so after food, which was different (it would even wake her up from a deep sleep). The only thing that seemed to make some sense is that maybe she was having more secretions from being congested (post nasal drip) and that is what started the retching. She does have a sensitive gag reflex.

When she retches, it is just hard to watch. She is not breathing and it has to hurt. All I can do is increase her oxygen while it is happening and try to console her afterwards. Several times today, she just seemed inconsolable. Such a rough day for the Bun.

Once again, she has been sleeping more than usual. However the few times when she was awake and in a good mood, I pulled out the camera for your enjoyment.

Josh and I are feeling a bit weary today. Also, we are feeling lonely. It is tough being away from home, from family and friends. And because of Ella and her condition, we are confined to our Gainesville apartment.

Please pray that Ella starts to feel better and that whatever is pulling her down would fade away. Also, that we will seek Him and hear His voice. Hearing and absorbing truth always helps to combat the blues.

John 10:27
My sheep listen to my voice; I know them, and they follow me.