Ella seemed to be in a bit of a better mood today for Kelly; she was more willing to play and do some of her exercises. And it wasn’t until late afternoon that she was tired and wanted a nap. Maybe getting more rest last night caught up with her.

The OT session went okay and the PT session went well. Just the same types of exercises day-in and day-out to try and get her eating food and stronger physically so she can move on to the next milestones.

Man, a side effect of these teeth that we were not expecting is grinding of the teeth. Ella’s been doing this for a few weeks now, especially as the top teeth have started to emerge. She doesn’t do this at night, only during the day when she is awake. Most articles I’ve read online say to not worry about toddler teething, and that it will go away with time as the toddler gets used to having teeth. But boy, it makes a lovely sound! For now, we try to simply encourage the binky in her mouth instead.

And Ella’s hair is getting a bit out of control! We’re trying to let it grow out overall, so we can convince someone to drop by the house and cut it into a style. For now, it’s free reign except for the pigtails and/or headband.

After two nights, it is looking like Captopril plays a significant role in sleepless nights for Ella.

Yesterday, she took the last dose of Captopril at 6pm (3 hours closer to bedtime than the day before). She fell asleep at 10pm and woke at 12:45am and 1:45am. Both times seemed to be nightmares of some sort. She started screaming and it could have been played off that she was in some type of pain, but as soon as I went into her room and picked her up, she stopped immediately. After a minute, I laid her down and she went back to sleep. Way too quick of a recovery for any type of pain for Ella, so maybe a nightmare?

I administered Captopril at 6am. Then, she woke coughing at 6:30am and 7:30am. So, once again there was no coughing until Captopril was given and she woke 4 times total: 2 prior to Captopril and 2 after Captopril. We’re still going to fine tune and try some other tweaks. And it is high on the list of discussion points for our next pulmonology appointment.

Deuteronomy 7:9 (NIV)
Know therefore that the LORD your God is God; he is the faithful God, keeping his covenant of love to a thousand generations of those who love him and keep his commands.

Ella had a pretty good day.

PT went well today. And Ella’s OT therapist has missed the past 2 sessions since she has been feeling ill. But Kelly continues to challenge Ella and present food to her each day. Her second feeding session with Kelly and sweet potatoes went better than it has in weeks. That was promising. Feeding is always a challenge with Ella, so “good” sessions without major meltdowns are nice to have here and there.

So, we were trying to think about the sleepless nights and the effect that Captopril might be having on her sleep. Ideally, this medicine is administered three times per day. For convenience, we give this medicine at 9am, 3pm and 9pm, when we feed Ella. She does not do well with medicines on an empty tummy.

Since coughing and insomnia are two side effects of Captopril, it can’t be good to give her this medicine at 9pm right before bedtime. So although we cannot discontinue this medicine or talk to the doctor about a substitute until the end of the month, we brainstormed on ways that we might lessen the effect of the medicine. One way that might make a slight difference is the time of day that we administer the medicine.

I think it will be several nights to see if there is any correlation. But yesterday, she had Captopril at 3pm. Then, we skipped the 9pm dose (A couple of weeks ago when she had her SVC procedure, she skipped a dosage of meds and the doctors did not seem that concerned). We put her to bed and she finally fell asleep at 9:45pm.

The first time she woke up was 2am, then 5am. Neither of these involved coughing which is a typical culprit for waking her at night. Instead, she was consoled quickly and rolled over and went back to sleep. At this point, she was having a great night – -only 2 times by 5am. I was very appreciative!

At 6am, I woke up to administer the Captopril. Her food pump still had about an hour to run, so I figured this would be the best time. About 20 minutes later, she intermittently started making whining noises. She wasn’t awake and didn’t need me to run into her room, but I could hear her making these noises (like she was dreaming or not sleeping as restful). I wanted to go in and check on her to make sure. It seems that she was still asleep but her heart rate went from about 110 to 135 in about 20 minutes. Captopril always makes her heart race. When she has it with other meds and she is awake, her heart rate often reaches 190-200. So, this definitely looked better, but you could tell that she was not sleeping quite as good. I wondered if her heart going faster was making the difference.

At 7am, her food pump was beeping so I woke up to turn it off. She still was sleeping. Then, between 7:15 and 7:45am, she woke twice coughing and wanting something to drink. Both times, she seemed more awake than the prior times she woke during the night. I’m pretty sure this is because coughing woke her.

Although I was still up several times during the night, Ella was up only 4 times. And 2 of those times were later in the morning. So, it was a much improved night for her, but we are not sure how much that has to with the lack of Captopril.

Right now, it is a nice fantasy that Captopril would be playing that much of a role in her sleepless nights. And I say that because at least it would be something that we could define and possibly eliminate over the coming weeks.

For now, we are going to continue experimenting and recording our findings to see if they point to Captopril until her pulmonology appointment on Tues, March 24th.

It was another rough night. By 3am, Ella had already been up 8 times. We’re trying to formulate our thoughts for our next doctor appointment – we just have to try to see if the Captopril medicine is causing this insomnia. It has been going on consistently (with about 1-2 “good” nights per month) for the past 5 months since Ella left the hospital.

Aside from me not getting sleep all night, I’m concerned for Ella too. She is a growing baby. It cannot be good for her to wake up this much, this consistently over time. She needs her rest too. So, we’re praying for wisdom in this area. This cannot continue to last and yet, we don’t have a light at the end of the tunnel. We don’t know that it is just a) teething or b) a cold or illness to where it lasts for a couple of weeks and goes away.

It was a mellow day for Ella and Kelly – no therapy appointments. So, they just hung out and played, working on her exercises.

And not that it is important, but Kelly happened to take a snapshot while giving Ella her Flovent breathing treatment. Yep, this is twice per day and Ella does not dig it!

And unfortunately, Ella’s great mood and great streak of days did end late last week. She was cranky and whiny over the weekend and into today. Right now, she also has been retching a lot (likely due to all the extra secretions from teething) and has a snotty nose she is battling.

On a positive note, we are still on lower oxygen requirements and have not run into any fluid issues since her procedure. This Wednesday will be 2 weeks. That is typically when we start to see problems, so we’ll be watching her oxygen requirements, heart rate and respiratory rate to see if she is having any challenges.

As always, thanks for the extra support and prayers.

It was mid 60’s in Denver today, so I took Ella out for a walk. It was nice to soak up the sunshine and fresh air.

While we were getting ready for the walk, she decided that she was excited about the thought of going outside. Oh, it’s the little things in life!

Ella continues to not sleep through the night. We’re not exaggerating either when we say that she’s up between 10 and 20 times a night. Some of those times include some real bad retching spells, mostly likely caused by all the secretions from her teething.

Between the coughing side effect of the Captopril and the teething, it’s no wonder she’s up a lot. We can no longer use Motrin to help with the pain, due to the fact that she’s on an aspirin regiment these days. The Motrin could thin her blood too much. Tylenol really doesn’t help much.

We also cannot use any homeopathic solutions that are given orally. On top of Ella’s very severe oral aversion, any topical solution would cause more secretions which then in turn only causes more retching. So, we’re doing our best to manage her teething with Tylenol and very little sleep on our end.

And let me say this: It’s Tina that’s taking the brunt of the sleepless nights. I take over the morning shifts on the weekend, but Tina takes care of her through the night and this is absolutely exhausting. We’re praying that the season of sleeplessness will end soon, but right now we don’t see that happening. Until she can come off of the Captopril and the bulk of her teeth are in, we’re pretty sure this trend will continue.

Tina and I enjoyed our “date night” this evening. Kelly has been so great to let us take some time away every Saturday night for a few hours. Ella behaved herself for Kelly while we were out and was in a good mood.

Going to do our best to get some sleep tonight. Hoping the Bun does too.

Ella did not sleep well last night; she was probably up about 10 times.

This led to her being less tolerant of her OT and PT sessions today. Whether she was just tired or wasn’t feeling as good physically, it showed in her mood.

Her weight this morning was down to 9.14 kilos. That is a significant weight loss from even the day before at 9.3 kilos. We’re not sure if that was just a fluke or not. Kelly weighted her a few times to make sure that the scale was working properly, but that weight kept coming up on the digital screen. This prompted me to try harder to reach the doctor today…we needed a plan to help Ella gain weight.

Thankfully, we were able to reach him and come up with a strategy. He wants to increase her food volume by 10%, in this case is 92ccs. So, we are going to increase each bolus feed during the day to 125ccs and her overnight drip to 387ccs, so we can achieve this increase (total of 1012ccs). We hope it will have minimal impact on Ella’s system, but provide the extra calories that she needs to gain weight. Tonight, we tried one of the increased bolus feedings and it went fine. Also, we gave her the increased amount in her food bag for the overnight feed via the food pump. She’s only been asleep for about an hour, but so far, no problems related to the increase in food.

We’re glad it is the weekend…time to simply relax and hang out as a family.

Ella had a good day today, but was a little more grumpy than usual. Her weight is up only slightly…9.3 kilos total.

Ella continues to improve in her core strength. She has been able to maintain about 20 minutes of sitting up on her own. Kelly has been working on increasing Ella’s flexibility with some stretching techniques. The Bun only tolerates this for so long before she lets Kelly know that she’s had enough.

Kelly watched Ella this evening so Tina and I could enjoy the company of some friends. Tina played some Bunko with a group in the neighborhood and I went to visit a family that is close to our hearts.

Thank you for continuing to follow us on this journey. I know there are many that comment, but even more of you that don’t. It means so much to have all the support and prayers.

Please pray that Ella continues growing stronger and that we’ll be able to ween her O2 and begin tirating her meds down. We have noticed that her O2 requirements may have increased a bit the last 24 hours. Not sure what to think about it at this point, but she’s still below her previous baseline of 1 liter. I looked at Ella’s numbers again after publishing this post and they were still low for the amount of O2 she was on. She was saturating 92% on a flow of 600mls. I checked the system, the line, and then Ella herself. Yeah…her cannulas were totally out of her nose on the right side of her face. Helps to have them IN her nose =). After getting her situated, I was able to turn her O2 down to 250mls. After a few minutes, she settled in at 99% saturation and her heart rate was as low as 94bpm. Feeling better now…and off to sleep myself.

Praising God for all the progress Ella has made and for blessing us with such a precious gift.

Ella was up several times last night, mostly between midnight and 4:30am, for a total of about 10 times by 8am. We’re not sure if it is teething pain. Out of nowhere, she will just start crying and crying hard. This causes her to desaturate and for her pulse oximeter alarm to begin beeping. After some holding and consoling, she calms down. Other times, she starts whining and breathing hard. I usually run into her room before the alarm begins beeping, and sometimes she is thirsty and wants a drink, yet other times refuses the bottle and requires her binky and frog to go back to sleep. Another theory would be nightmares, since the cuddling and consoling seems to work within a minute or two. And finally, we’ve never ruled out that her heart medicine, Captopril, is partly to blame since insomnia can be a side effect.

Even though the sleeping patterns have not improved, Ella looks better. Each day, we’re surprised how good she is looking. You can just tell in her color. And her behavior has always been telling of how she feels…and she has been in the best mood. In the past, we’ve had days at a time that we would term as “honeymoon periods”. Right now, we’re hesitant to believe that this is her new baseline, but that would be amazing if this was not a honeymoon!

Her OT and PT sessions went well again today. Not as much melting down, more tolerance of the exercises and better able to compose herself when she did get upset. Again, all signs that she is feeling better.

We’re so glad for Kelly too. As you might imagine, Ella is a lot of work…and she is so much more fun to take care of when she is feeling better!

Ella’s weight has stayed the same this week. We’ve only had minor fluctuations between 9.2 and 9.29 kilos for the week (20.28 pounds to 20.48). We’re still waiting to hear from her pulmonologist to hear if he has any thoughts on next steps. Since she cannot handle an increase in the food density, we’d like to simply increase her fluid. With the recent SVC procedure, our thought is that she may not be quite as fluid sensitive. Another option would be to change her diuretic dose, but we’d like to see if we can keep her current Aldactazide dose the same and not have to give Bumex every two weeks. That would be a big step to not ever have to use Bumex. She’s been using it in one form or another for 1 year and 2 months. Moreover, she’s required using some type of loop diuretic since she was born (before Bumex, it was IV Lasix in the NICU). The long term effect on her kidneys is not the best.

We’ll be watching her saturation levels when she sleeps over the next few nights. Last night, her saturation was not quite as strong as the previous nights. Either way, her oxygen requirements are still way less. This is when we wish that our home was not at an elevation of nearly 6,300 feet. We’re curious to know what her lungs might be capable of at sea level. Someday, we will get to travel with Ella to sea level. It will be interesting to see if there is a difference for her.

As I end the post and prepare for Ella night duty, we’re just so thankful for last week and the successful procedure. We’re still in a bit if awe and disbelief that Ella’s SVC is open…that Dr. Fagan was able to get it open and place two stents…all just one week ago today.

Deuteronomy 10:21 (NIV)
He is your praise; he is your God, who performed for you those great and awesome wonders you saw with your own eyes.

Ella has to be feeling better. She has been in such a good mood.

She had both OT and PT today – her first sessions since the procedure last week. Both therapists mentioned that they thought she looked better overall; her color, her behavior, etc. We think she looks better too, but it is always good to hear from someone that sees her regularly but not every day.

The OT session was still difficult, but we moved her in front of the TV with Mickey Mouse Clubhouse playing and that seemed to distract her quite a bit from the feeding task at hand. She still had her meltdown moments, but dealt with it a lot better than yesterday.

The PT session was enjoyable – she was smiling a lot. It is great that the SVC procedure had minimal down time for the Bun. It is nice to see her getting back into therapies after only a few days.

Her weight was up a tad this morning to 9.27 kilos, so we see that as a sign of improvement. We’ll see what happens over the next few days.

Not much else to report, except that she is a ham! She loves the camera and was posing throughout the day.

I read this poem that was posted on another blog of a mom that is getting ready to have a baby diagnosed with CDH. It is such a good reminder of the truth.

Who Holds Your Hand?

The journey lies before you,
The path remains “unsure”,
And there are times you question,
All the things you must endure,
Others may have walked this path,
But still, it’s not the same,
You say Lord, haven’t I done right?
You wonder…who’s to blame,
You say, Lord, it’s too difficult,
This desert, I must tread,
Why can you not give us,
A different path instead?
I know the plans I have for you,
God tells me, carefully,
My plan is not to harm you,
Just keep your eyes on me.

The very first step, which you take,
Into this sinking sand,
Was laid out for you long ago,
And set by my own hand.
And so, I set my feet ahead,
Doing what I must,
Trudging into the unknown,
And giving Him my trust.

The sand feels warm beneath my feet,
The day grows hot and dry,
I walk forward, my eyes on him,
Not stopping to ask why,
And little do I even know,
That others watch me too,
This trip a testimony,
Of all that God can do.

But I am growing weary,
Thirsty, worn, tired,
Trying to remember,
All the times I’ve been inspired.
In the middle of this desert,
I’m losing my momentum,
God says, place your thoughts on my Son,
Remember why I sent him.
Because He walked this desert,
Because He suffered too,
Because He knows and understands,
The pain your going through.

As others watch your journey,
Your strength gives them new hope,
They see Me in your struggles,
And find new ways to cope.
Not looking, you will find me,
Within this sinking sand,
Know who walks beside you,
Know who holds your hand.

~Stephanie Husted, July 2008

Ella had a pretty good day. She was in a great mood unless she was working on feeding. At those moments, she had meltdowns.

When she has a meltdown, we have to increase the oxygen rapidly these days. The great news is that she has been requiring less oxygen since her procedure last week. During the day when she is awake, she is requiring 750ccs and at night, she has been on 500ccs. We’re hopeful that this is a good sign for Ella and that we will slowly be able to wean her oxygen requirements even sooner than anticipated over the coming weeks and months.

She was sporting one of her dresses because it was 70 degrees in Denver today. Yesterday was 65 degrees, today was 70, tomorrow should be 70 and Wednesday’s forecast is for 65 degrees. Even just these brief breaks in the winter weather help and make us anxious for the warmer weather. We’re excited to get back outside with the Bun!

Ella has shown weight loss the past few days. This is a bit surprising. We expected a bit of a dip right after the procedure since she didn’t have food for several hours. However, we also increased her food volume to 920ccs, an incremental increase of 100ccs, from where she was a week ago. We did the increase in fluid because she had started to lose weight even last week prior to the procedure. But normally adjusting the fluid by that much would start to show some gain after 5 full days. She is now at 9.2 kilos (20.2 pounds). We’ve emailed her pulmonologist to get his thoughts. Our initial instinct is that maybe the diuretics are contributing to the weight loss. Normally, she requires a good amount to keep her pulmonary status in-check, but it could be that the amount of diuretics is too much now. We’re hopeful that is the reason, as we would love to wean the diuretics. Since the procedure, Ella’s body is responding to things in a different way so we’re trying to pay attention to see what adjustments might need to be made as the days and weeks pass.

We’re just so thankful for our beautiful baby girl. We thank Him for allowing us to be her parents.

Psalm 25:10 (NIV)
All the ways of the LORD are loving and faithful
for those who keep the demands of his covenant.