The Bun fought going to sleep last night, and finally settled down around 11:30. Even thought she slept through the night (thank God), it still made for a very rough morning. I attempted to wake her at 9am so we could start her routine. Well, she was not going to have it. I tried softly singing to her and rubbing her back, but she didn’t want to get up.

I changed her diaper so I could hold her. After that, she got herself pretty worked up, so much so that I was having a hard time consoling her. Her saturations kept dropping and not coming up. 70…60…50..! What the??!!! It was at that point I realized that her oxygen tube had disconnected from the water trap in the line.

I cranked up the O2 so the Smurf colored Bun would recover a bit quicker. She was still really fussy though…and so snarfy. This cold, or whatever she’s been dealing with over the last couple weeks, is really reeking havoc with her getting O2 through her nose.

As soon as I would try and lay her down to feed her, she would react if there were needles in the bed. She would just cry until I picked her up.

Well, I wasn’t going to be able to feed her this way, so I wrote off the morning routine and brought her down to her bed downstairs. She calmed down enough there for me to feed her, but continued to be fussy afterward.

Shortly before 10am Ella had a major retching episode. She absolutely refuses to drink anything, so all her secretions build up and they tend to be pretty thick. We try to manage them as best we can with some saline in the nose, but she still struggles to swallow.

The scary moment occured when she coughed, gagged, and wretched a bunch of snot and scretions into her mouth, filling it up! It happened so quick I couldn’t get her on her side or turned over so they would come out. She started to breathe them in and gag and cough rapidily. She finally managed to swallow most of it down and catch her breath. I’m pretty sure it was as scary for her as it was for me.

After this event I had bit of a breakdown. I think it was the emotions of everything catching up with me.

The challenges of our special needs child on top of life’s other realities over the last few weeks has me worn down. I do find incredible strength and peace in my relationship with Christ, but my emotional man is pretty raw. Emotional coping for me includes eating, escaping into TV, eating, not focusing on the details, oh…and eating. These mechanisms for escape tend to harbor issues of their own which can also make the situation worse in the long term.

With that said, I’m not denying the truth of the situation. I know how real it is, and it really hits home when I project Ella as the child in Tina’s womb. The bottom line…that’s our kid in there. It’s hard to imagine that it is our child going through this, but it’s a life that God created. He knows all the circumstances surrounding these events, and also how they will play out for eternity.

Our trust in him does not guarantee an easy path for life, but we can hold fast to His promises. The scripture at the top of the blog (Jeremiah 29:11) rings more true now than it ever has.

Enjoy the pictures of Ella. The one below was snapped in between her weekly cannula change. She had a good time this evening playing in her exersaucer. Praising God for all the progress she’s made.

Ella Renae had a pretty happy day and the slideshow above represents the gamut of emotions this girl shows off daily. She is such a good kiddo…as long as she gets what she wants. Try and feed her, or give her a bath, and she gets more ticked off than a 16 year old who just lost her cell phone privileges.

Kelly’s spending the night at a friends and Ella is winding down for the night. Tina and I are escaping into mindless activities but also reflecting on the day as it concerns our current life situation, and our Savior’s death over 2000 years ago.

Thank you for the comments, concerns, prayers, emails and flowers. The outpouring of support is so touching. Our faith is unshaken and our Lord is as trustworthy as ever. Our lives, including the child in Tina’s womb, are in His hands.

We’ll leave you with a quote that we found attributed to C.S. Lewis:

“Tragedy is what God uses to wake us up from a life that would otherwise be hopelessly lost from its intended purpose.”

The Bun slept pretty solid last night. She only stirred a handful of times and was able to console herself back to sleep without intervention all but two of those times.

I took care of Ella this morning, and shortly after her feed, she gifted me with a significant diaper. She’s had a few blowouts recently and this one was close too. I think what saved it was the fact that we just graduated her to a size 4 diaper. Man…what a GOOD time that was cleaning things up: Her, the bed, the sheets, her, clothes, her. No one can accuse me of being afraid of a little poop festival =).

It was still pretty cold today. Our thermometer indicated 23 degrees, which seemed a bit low to me. I stepped outside to see for myself, and I figured out why the temperature was maybe off a bit. One side of the railing on our deck was encased in a half inch of ice, including the thermometer. That may explain the extra cold reading.

Needless to say that we spent most of the day inside. Grandma finished up some sewing for Ella, Tina took care of the Bun, and I was able to work on a few geek projects I’ve been itching to do.

Tina and Grandma went to the mall late in the afternoon and while they were out, it started snowing again. Took me a bit by surprise, but it’s Colorado, so you really need to expect anything.

After Ella’s bath (which is always filled with major drama), the Bun spent some time cuddling on Grandma. Grandma had a good time making faces and getting Ella to laugh and smile.

Praise God for all the progress Ella has made. I know there are times when we want things to move along faster, but our growth and progress are perfected in God’s timing. What a blessing our sweet girl is. Thank you for all the love, prayer, and support.

We had a great day with the Bun, and would love to share the details but we’re just too tired tonight. We’ll fill ya’ll in tomorrow.

G’Night all.

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.

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 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 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 had a great day. We’ve all enjoyed a relaxing Saturday. Enjoy the pics of the Bun.