It was a gorgeous day here in Colorado. We took advantage of the weather and ventured on a little road trip to Grandpas.

We went to lunch at Pei Wei and sat on their patio outside. We then headed over to his place to hang out with the “other kids”…Manny and Maggie.

We all enjoyed the day…but we’re exhausted. Going to go get some sleep while we can.

G’ Night all.

Ella still woke up several times last night, however, she seemed to be less restless overall. Each time, I was in and out of her room quickly. Also, her pulse oximeter went off 5 separate times throughout the night. I still haven’t figured out why this is happening. Once, it was her cannulas out of her nose. But the other times are still a mystery. By the time I get to her room, sometimes it looks like her saturation was low and is steadily climbing back into range (does she not breathe momentarily?) while other times everything seems fine (maybe the foot sensor loses connection for a second?).

We have discovered for a while now that the food pump didn’t seem to be working right. When we would wake in the morning, it would state that it delivered a certain volume, yet there was a lot of food left in the food bag. So, Kelly did an experiment late yesterday. We realized that the food pump was off…by quite a bit. This might also explain why Ella was not gaining the weight we thought that she should with the incremental increases in fluid. It also means that although she has been getting slight increases in fluid (we increase the feedings during the day that we measure ourselves), she certainly has not been getting the volume we expected. Today, they replaced the food pump. Just to make sure, Kelly tested it and it worked fine. So now, we will be back on track to increase Ella’s fluid (knowing it is accurate) and expecting to see some great weight gain over the next several days.

Those other teeth are working their way out because Ella has been extra droolly today. This has also caused more retching since she does not manage her secretions well. This also contributed to her fussy mood. She simply did not want to do certain things, like eat. However, she still enjoyed her PT session after some coaxing. And of course, she has still continued to be extra clingy.

We’re excited that it is the weekend. We plan to go and visit Grandpa and the dogs tomorrow and hope the 70 degree weather forecast comes true!

Last night after Ella’s bath, I couldn’t help myself anymore. I asked Kelly to hold Ella, I grabbed the scissors and started cutting. I was a bit shy since I’m not known to be a hair fashionista. But if nothing else, the mullet is gone from the back of her head! Maybe I need to take this up and get more practice. It’s just hard because I can’t take her anywhere in public to get her hair cut and I can’t seem to find any stylists to come to the house. So for now, the princess gets Mom haircuts!

She was up about 8 times last night. There were 4 other times that her pulse oximeter just started alarming. I guess that is one benefit of having a NICU baby – the beeping alarm doesn’t even phase her! Of course, I wake up and listen to see if the alarm persists or if it is a fluke. At least I was able to doze off into little naps in-between her wake-up calls. It makes me feel better the next day and doesn’t require as much napping.

Another one of the teeth on the top row came in. So now we have 2 on the top and 2 on the bottom. Pretty soon, that smile is going to get very toothy!

Josh decided to take matters into his own hands this morning. He paged Dr. Abman, the pulmonologist. Although we have an appointment next Tuesday, he wanted to ask him about Captopril and what his thoughts are on discontinuing it. After some discussion, Dr. Abman agreed that the main reason we gave her the Captopril was to help the diuretic be more effective. Since we have been able to increase her fluids and she doesn’t seem to be having an issue, he is open to the idea. He asked how much Captopril she is currently taking. We let him know that she is getting 7.5ml, three times per day. Then, it was like the angels started singing. He said to go ahead and give her 1 dose of Captopril each day until our appointment on Tuesday and see how she does with the change. If all goes well, he will go ahead and discontinue it. Yippee!!! Aside from the impact it may have on Ella’s sleep (which is huge), any discussion of getting her off more medications is great.

So pray that she will do well with the lack of Captopril over the next several days. And of course, I would love to see the sleep improve!

Trust the Lord

Until I learned to trust the Lord,
I never learned to pray;
And never learned to fully trust,
Til sorrow came my way.

Until I felt my weakness,
His strength I never knew,
Nor dreamed, til I was stricken,
that He could see me through.

He who drinks deepest sorrow
Drinks deepest too of grace,
God sends the storm so He, himself,
Can be our resting place.

His heart, who seeks our deepest good,
Knows well when things annoy;
We would not yearn for Heaven
If earth held only joy!

-Anonymous

Well, Ella was up 8 times last night.

I did try giving the Captopril late at night before I went to bed, but while Ella was asleep. And although she woke up just as much throughout the night, I must admit that each time she woke up, she was coughing. So, I think that Captopril definitely causes the chronic cough. We’re going to try a different method tonight with the Captopril and are going to see what happens.

In between her whining today, she did well with occupational therapy and physical therapy which made me happy. Her cold does seem like it is mostly gone (nose is clearing up, just some fussy behavior), so she seems to be tolerating the exercises a bit more.

Her retching is still the same – – a lot. She retches multiple times per day. Unfortunately, the SVC procedure which opened up her heart, did not have any impact on the retching. We did not expect for there to be any improvement. Once we got the last upper GI at the beginning on February, we got our answer. Her nissen is still tight and intact. It takes longer for her esophagus to empty into her belly and the liquids and secretions “pool” in her esophagus. When it sits in her esophagus, your body’s normal reaction is to get it to move! This is likely the major trigger of the gagging. There isn’t anything they can do at this point to alleviate this symptom. If she was older, I think we could help her understand how her body is designed differently and some tactics to help her swallow and not retch (ex: try drinking small sips versus a larger volume). But until she is at an age of understanding, I think the retching is going to continue.

She weighed 9.56 kilos this morning. Since she seems to have plateaued, we decided to go ahead and give her more fluid. We increased her daily amount by 50 ccs today; she seems to have tolerated it fine. If all goes well, we will likely increase more in the upcoming days. We want the Bun to gain more and more weight! She is still not in the “normal” growth curve, so we would like her to get closer! This will simply help her lungs grow which helps her in every way possible.

And once again, I’m still surprised at how much having the SVC open has made a difference in her fluid issues. Her heart rate last night was between 90-100, which is the lowest that I have seen, almost ever. I think the last time she did that was over a year ago, when she was in the NICU and they gave her Sildenafil for the first time. And it was only for a few nights before her fluid issues started up again. So, it is a very good sign that we have increased fluid and her numbers have continued to get better. Although I have seen a low heart rate before every once in a blue moon, I have not seen it while increasing her fluid. That is a victory from above that we will claim!

He is Always There

We can’t foresee the turning of the tide
When problems beset us and tears are cried.
Sometimes life deals from the bottom of the deck
Filling us with worry and leaving us a wreck.

The enemy seeks to devour and destroy,
Using deceptions to eliminate our joy.
While walking through the valley, our heads hung low,
The mountain top seems so high, our footsteps slow.

How many times have we traveled this road
To battle the frustrations of troubles bestowed?
Yet when we come to our darkest hour
God demonstrates His infinite power.

It doesn’t matter how bad things might seem,
He always comes through, our faith to redeem.
God will not fail us in our times of pain.
He’ll never forsake us, by our side He’ll remain.

So when we find ourselves at a total loss
Or when the valley seems too wide to cross,
Just remember you’re in His love and care,
Look over your shoulder, He’s always there.

~Anonymous

Ella was up 7 times last night between 12:30am – 7:30am. It was rough on Mom.

Ella seemed to take some warming up this morning. I think maybe she was tired from not sleeping well either. So I could hear her screaming this morning and giving Kelly a hard time! But once she decided that it was a new day, she started to have fun.

We tried to pinch Ella a bunch of times, but then realized that she had the slightest bit of green on her shirt! Yep, it is hard to see, but there is a vine with flowers at the top of her shirt.

It seems like her cold might be on the mend. Her nose seemed a bit better today. And we were slow with any therapies, but she seemed more tolerant today. Plus, it was 70 degrees today in Denver, so Kelly took out the Bun to enjoy the sunshine!

Her weight was 9.57 kilos this morning. She is still hanging out in the same range of weight, so we will likely try increasing the volume of food tomorrow. We’re excited that she has not had any fluid issues so far. In the past, just deciding to increase volume was not an option. But so far, her numbers are looking great, so we are going to go for it. If there are any problems, it should time out with her pulmonology appointment next week.

Ella woke up about 5 times last night. Unfortunately, I was up from 3am – 8am, so I spent a lot of today catching up on zzzs.

This stinkin’ cold is still hanging on to Ella. She spent the day wanting to just be held, whining lots and just acting like she doesn’t feel good. I hope she doesn’t have anything else going on. It seems like it is just overall fatigue and her snotty nose that is bringing her down. So, her and Kelly had a mellow day. We even canceled her occupational therapy session, as we knew that Ella would not tolerate working on her least favorite activity (eating). We’re hoping that she feels better soon.

As of this morning, she weighed 9.55 kilos, which was her weight last Friday. We’re not sure if we are hitting another plateau in weight gain. We will watch the next couple of days closely and may increase her fluid again.

The great news is that we have not had to give Bumex and she has tolerated a large increase in fluid (200 ccs higher than right before her SVC procedure). Her numbers look great on reduced oxygen when she is sleeping at night. It tells us that her SVC being open is definitely the break we needed for her body to not be quite as fluid sensitive. Over time, we’re hoping this means that we can eliminate diuretics. We’ll just have to wait and see.

We have another week before our various doctor appointments: pulmonologist, pediatrician, hearing test, etc. In the meantime, we are going to try and get her better this week and take it easy.

Colossians 2:6-7 (NLT)
And now, just as you accepted Christ Jesus as your Lord, you must continue to follow him. 7 Let your roots grow down into him, and let your lives be built on him. Then your faith will grow strong in the truth you were taught, and you will overflow with thankfulness.

Well…Ella slept better last night, but Tina didn’t quite get a full nights rest. Ella only woke up 3 times total during the night. Unfortunately, Tina woke up at 5:30, thanks to the monkey nugget (Macy the cat) that sleeps next to her. After the cat woke Tina up, she couldn’t get back to sleep.

I took over for the morning shift and got Bun ready for the day. She weighed in at 9.53kilos…not really any different from Friday. Ella has been extra clingy these days. She often gets real fussy right when you put her down, but gets real content while holding her. I’m guessing it’s just a phase she’s going through, but I don’t mind snuggling with our sweet child.

It’s good to see her numbers staying in line though without the use of Bumex. Having her stay off this diuretic will be huge progress, and at this point, we’re hopeful we’ll be able to do just that.

We all enjoyed the beautiful weather in Colorado today…even the cats.

Kelly seems to be over her cold, just a bit tired still, and Ella isn’t quite as snotty tonight either. Tina and I took our weekly date night tonight and enjoyed some alone time for dinner.

We’re all going to play some cards together and hopefully going get a good nights rest. Praying for a solid week of progress for the Bun, and for health all around.

Praising God for all the blessings of life.

Ella had a rough night.

First, she hardly napped on Friday with Kelly (a 45 minute nap). I guess she was caught up on sleep from the night before. So it was 11pm, and she still did not seem tired. But we needed to hook her up to the food pump and start it for the night.

We tried various techniques from 11pm – 11:45pm to get her sleepy. Nothing was working. She was just hyper and kicking. Didn’t want her binky. She simply did not want to sleep. Finally, I suggested that we just let her whine herself to sleep, as long as her pulse oximeter did not alarm.

For the next 30 minutes, it was constant. Finally at 12:15am, we thought it best if we give her some Tylenol. It doesn’t work great, but it can help to make her sleepy. When I went into her room to give it to her, she had moved around in her crib to where she was in a horizontal position at the very top of the crib and pinned against the bumper looking at the ceiling! I wish I had a picture – – it was so funny!

Once I gave the Tylenol, it was another 30 minutes of whining and crying. She finally stopped at 12:45am. I went into her room, turned down her oxygen and hoped that was the worst of the night.

At 3:30am, her pulse oximeter alarm beeped three times in a row. I ran into her room and everything looked fine. I hate that – it is like a fake fire drill. It got my adrenaline going, so then I was up and couldn’t fall back asleep.

About 4:15am, Ella woke up screaming. At first, I thought maybe it was just one of those times where I could pick her up and console her quickly. Not this time! She was crying loud and was not stopping. Josh had ear plugs in and could hear her screaming on the monitor through the ear plugs! This definitely seemed like pain…maybe tummy pain. I think all the crying and whining (almost 2 hours worth) put lots of air in her belly. After venting her g-tube and 10 minutes of joint assessing, we opted to give her the Maalox. Since it goes right into her tummy via her g-tube, the relief was almost immediate. Then, I rocked her for about 20 minutes. She slowly fell asleep. I put her back in the crib, turned down her oxygen again, and crawled into bed. Not five minutes passed and she was crying loud again! This time, I went into her room and picked her up. It seems that was all she wanted. So, I spent another 30 minutes rocking her back to sleep. An hour later, I crawled back into bed at 5:15am and hoped for the best. Ella didn’t do too bad, but I did have to get up and give a med at 7am and turn off the food pump at 8am.

All day, she was clingy and you could tell that she did not feel good. It seems like she has a cold. And then, it all started to make sense. Kelly has a cold too. We’re not sure where they both caught it since they were inside all week, but it came from somewhere! So, Kelly is trying to relax and sleep a lot this weekend too.

Ella just won’t tolerate anything she doesn’t love 100%. For example, getting twisted like a pretzel and doing yoga moves with her oxygen tubing! She loves that activity, as you can see above!

I guess you can’t blame her for being cranky – – she really doesn’t feel well. We’re not expecting tonight to go well, but we can always hope! Really, we’re just holding out for this cold to go away!

It was the one time each month that Ella sleeps through the night. She went to bed at 9:45pm and was asleep until 6am! I wish I could say the same for myself. I slept from 11pm – 2am, 3am – 6am. So, only 6 hours of sleep, but it wasn’t Ella’s fault last night.

I would have thought that Ella would have been in a better mood today since she got so much sleep last night. She had her moments of smiles like in the morning when her and Kelly were reading books together. But overall, she was more fussy and less tolerable during the day, especially while doing her exercises. Apparently, she did okay with physical therapy but completely melted down with feeding times. I guess she just really did not want to eat and she was letting Kelly know that fact.

Her nose is still snarfy and she keeps pulling and itching at it. This has been going on for several days. Not sure if it is related to the other teeth breaking through or not. But whatever it is, I think her patience has run out!

We’re looking forward to the weekend…and hope that she can continue to have some more restful nights.

Ella had a busy, typical day with OT and PT. You can see from the pictures all the fun she was having while performing her exercises.

It has been 2 weeks since we came home from the hospital from her SVC procedure. And even though the nights are sleepless, she still looks better to us. I think her little body is very happy about having her SVC open. Imagine a large city with only side streets and no highways for traffic flow…and now, the freeway opened up! This is just huge for her.

And the morning routine…our lovely scale. She has definitely put on the pounds since we increased her food last Friday night. She has gone from 9.3 kilos (20.5 pounds) to 9.54 kilos (21.03 pounds) in just under a week. Normally, that type of weight gain is a red flag for us. And it might still be too early to tell, but her numbers looked great when she was asleep last night. This leads me to believe that she is not retaining fluid but gaining true weight. The next several days will tell the true story.

Ella’s Captopril experiment last night was still in force. She woke up 5 times, versus the 4 times the past two nights. Heck, this is still an improvement. I wish we could give Motrin to her because the one time we tried it, she only woke 3 times. And that was without removing the late dose of Captopril. Well, one can dream.

And I will end on this note…I keep coming across these amazing poems on other CDH blogs that make me cry. They just tug at my heart strings. I think all parents, especially those with children that have any type of special needs, can really relate to this rhyme.

The Chosen Ones

I had a dream the other night. It came to me so clear.
I stood before the throne of God, afraid to come too near.
God said to me, “I hear your prayers. There are answers you can’t find.
I brought you here to talk to me and help to ease your mind.
“I said,”Well, yes, God, I am upset…About my special one.
This punishment is awfully harsh…Whatever have I done?”
God looked at me and shook his head, He said, “My Dear, you’ve got it wrong.
I sent this special child to you because you are so strong.
I searched and searched to try and find someone with a love so rare.
Parents so unselfish they could give her that special care.
I try to save my special gifts, like those you’re speaking of,
for a special kind of parents I call the ‘Chosen Ones.’
Of all the ones to choose from, I know I’ve got it done…
Parents who deserve my best, an honor you have won.”

-Unknown