More junk for Lilly to get out

I'm not sure if we're in a new phase of Lilly's illness or if she now has a cold. (Her brother seems to have a light cold today.) Off and on all day her nose has been running with thick greenish yellowish stuff. I use the NoseFrieda to suction her nose and the stuff I'm getting out has actually turned my stomach a few times when I clean out the nose sucker after a suction.

Nice image, huh?

But we do what we need to do to try and help our kids. Even when it makes us queasy!

Lilly is getting irritated with having her nose messed with, but other than that seems OK today. For the past two mornings she has spit up shortly after having her antibiotic - and I can smell the medicine in the spitup. I hope she is keeping enough inside to help her properly. (She gets a dose at night too.) I'm trying to give her the medicine with yogurt, to help her stomach. It's been working for the most part.

I took the pictures I posted today this past Saturday. It was my second round of having all three kids in front of the Christmas tree to try and get a good picture for our annual Christmas card. NOT EASY TO DO! I'm glad I'm not a professional photographer. Group pictures are hard. Seems like someone either blinks, makes a bad face, turns out a little blurry, or something.

Yesterday my husband got an e-mail for us from A.W., a friend of his mother's. She shared some kind thoughts and ended with a poem entitled "Hope" by Emily Dickinson. I thought that was neat since I had mentioned hope in yesterday's post. I admit I'm not a huge fan of poetry (though I used to crank it out as a kid) but I liked the poem enough that I have posted it below.


Hope - by Emily Dickinson
Hope is the thing with feathers
That perches in the soul,
And sings the tune--without the words
And never stops at all,

And sweetest in the gale is heard;
And sore must be the storm
That could abash the little bird
That kept so many warm.

I've heard it in the chillest land,
And on the strangest sea;
Yet, never, in extremity,
It asked a crumb of me

Return of the turtle

Lilly continues to deal with her cold pretty well, thank God. I've spent a lot of time today suctioning and/or wiping her nose. She is starting to get MAD at me for that. I think she's so tired of it and her nose is probably feeling pretty raw by now.

We got out Lilly's nebulizer with the turtle mask as soon as she got sick. She tolerates it in general, but as you can see in the picture she tends to glare at me at times. (We call this look "the furrowed brow.") She's also gotten better at grabbing the tube and pushing it away. Sometimes she starts talking into the mask and I think she's fascinated in how her voice sounds in it. I think the nebulizer is a huge help in keeping this cold under control. Though her cardiologist did warn me to be very careful monitoring her because the nebulizer can mask a nasty virus, the kind that Lilly needs to be hospitalized for.



After having temperatures in the 80s all week, today was amazingly cool. Only in the low 60s. That, and Lilly growing out of her 6 month sized clothing, gave me the push I needed to go through the big bag of 9 month sizes I recently got from my sister-in-law. (She and my brother P. have a daughter 3 months younger than Lilly. Of course their girl is much bigger, though I think Lilly has her beat for fat rolls.) It was fun going through the clothes because some of the outfits in the bag were my older daughter's. But as I put a lot of it back in the bag, it made me think again that when you have a child with a g-tube, and they're on continuous feed a lot, there are simply some types of clothes that won't work. I find dresses and swing tops the easiest with Lilly and plan on sticking with that for the fall and winter. I'll just add stretch pants underneath.

Lilly worked hard in occupational therapy today. The therapist again marveled at what a hard worker Lilly is and how she is amazed that Lilly seems to enjoy so much stimulation. She thought Lilly was doing so well with sitting that she hopes she'll be sitting on her own by Christmas. I am much more hesitant in thinking that, but that certainly would be a wonderful gift.

"Every good and perfect gift is from above ..." - James 1:17

Smiles and snot

Lilly cried hard when I put her to bed last night - very rare for her. I think she was just so tired and not feeling good. But she had a good night - slept almost 13 hours. Only woke up once and just wiggled around quietly for awhile. (And that was the only time she set off the pulse ox.) Her fever was gone by morning. Thank you God! She was full of smiles for me when I got her up.

She had a bit of a congested sounding cough when she got up. But I suctioned out a lot of stuff then did a nebulizer treatment. She hasn't coughed since. Just lots of congestion in her head. (But it's staying there pretty good - here nose isn't running too often.) I can't hear anything different in her chest when I listen with my stethoscope.

Yesterday I was so sure we'd be heading to the emergency room last night that I partially packed. (And as my daughter T. pointed out - if I packed then I wouldn't need to go.) Though I'm still concerned this illness might get to that point, right now Lilly isn't doing too bad. She even laughed while in her bouncy seat at lunch. That was really exciting to hear because she hasn't done that since her last cold a month ago.

So thank you everyone for your prayers and we so appreciate you continuing. There is real power in prayer!

Failed

Lilly is officially sick. Her temperature is 101 degrees. She's got extra congestion and a bit of a cough. I had to put oxygen on her while she slept and her blood/oxygen levels on the pulse ox are lower than normal. (Upper 80s to low 90s today.)

I feel like I failed to protect her from the colds and fevers her siblings have. I know it's hard to do in one home. But I really tried.

However, I did get a couple of ideas from Aaron's mom and from Ann Barnes, author of the Trisomy 13 & 18 handbook that I have a picture of and link to in the lower right side of this blog. From their ideas here is what we will do next time someone is sick, in addition to what we're doing: everyone will dry their hands on paper towels or their own towel (I'm going to put a towel rack on the door of our main bathroom and each person will get assigned their own hand towel), I'm going to the thrift store and will get a really big shirt/smock to wear when I pick up Lilly, will keep handles and door knobs and the computer keyboard and mouse wiped very frequently, and anyone that is sick that must hold Lilly (me I guess!) will wear a mask. My husband also said that next time Lilly will be kept out of the same room as the sick person.

Of course there is only so much we can do. Lilly's health, sickness and life is in God's hands. Please pray with us that the Lord will heal her, again, and that she won't have to be hospitalized for this.

"Have mercy on me, O LORD, for I am weak; O LORD, heal me, for my bones are troubled." - Psalm 6:2

I think she's made it!

Today's photo credit also goes to my daughter T. She took this one a few days ago. What a big smile Lilly! As you can tell we love taking pictures of Lilly. I have thought off and on how I wish we had a special chair for pictures. Something that held Lilly upright better and especially kept her neck and head straight. We're limited in our propping places around here. But, Lord willing, one day she will learn to sit up straight on her own and hold up her head.

Lilly still has some lingering congestion from her cold. But it's only in her head. She is still acting like she feels just fine! She's smiling, talking LOUD, and playing with her toys as normal. If not for the occasional flood of green snot (!) I wouldn't think anything was different. I can't express what a relief this has been. Lilly actually handled a cold like a "normal" child! We stayed out of the emergency room, thank God. I am just so happy and relieved.

I'm thinking the nebulizer treatments really helped. (By the way - if you use Xopenex, they have a special "Breath for Less savings program" where you can get the medication discounted or for free. I am still in shock that we qualified for FREE!) Also, at night I increased her oxygen from a half liter to one liter. Did lots of saline spray and suctioning when she was awake. Lots of hard patting on her back to get phlegm loosened. And I ran my diffuser 24/7 with an essential oil mixture for colds. Also used Hylands C-Plus Cold Tablets. And of course lots and lots of prayers!

Tomorrow I am going to let her cardiologist know what's been going on in detail, so he can decide if it's still safe to proceed with the heart cath on Thursday. I'm thinking maybe not, since anesthesia is involved. But I am not a doctor.

In the meantime I am continuing to:

"Give thanks to the LORD Almighty, for the LORD is good; his love endures forever.” - Jeremiah 33:11

So far so good ...

Lilly is holding steady from her cold, so far. Yesterday afternoon she started treatments with her nebulizer. She's getting them delivered through her infant sized turtle mask every 4 hours.

Lilly seems like a "regular child" with a cold right now. Yesterday she played a little with the animals hanging on her bouncy seat and talked some. She even smiled for big sister last night. (Last picture.) She sounds pretty congested but so far it is staying in her head. She's getting lots of saline spray and suctions. Since she wasn't doing too bad, yesterday, both her therapists came at their separate times since they were nearby anyway. I thought we might need to end the sessions early, but Lilly did great. She absolutely loves therapy.


Yesterday afternoon I hooked her up to the pulse ox to check her heart rate and oxygen level. (This is a great clue if her body is really struggling.) Much to my surprise it was better than usual! Her oxygen levels were in the upper 90s and even 100. And while she has a cold! (It is usually mid to low 90s because of the VSD in her heart.) I have not had her on the pulse ox all summer long so perhaps her body is naturally like this now. Which means maybe we can get rid of the oxygen at night! (I know I know I'm rushing ahead in my thoughts.) We'll track her once she gets better and see.


Lilly slept normally last night, praise God, only periodically fussing in her sleep as she rubbed at her oxygen cannula. The pulse ox did not alarm once. I couldn't believe it! I laid there a lot last night and this morning just thanking God. And thanking him for my peace too. I don't feel so panicky today. Lilly is in my lap right now chewing her thumb and talking a little. Thank you everyone for your prayers for Lilly!

I've mentioned a little boy named Caleb on this blog before. He is 2 years old and has Trisomy 18. Just a couple days ago he went in for a routine procedure to get his tonsils and adenoids removed. Shortly after that he had a heart attack and it looks like the left side of his heart is damaged. Please pray for his recovery and his parents and siblings peace. Stuff like this is so hard. We know our special babies most likely won't have normal lifespans. But it is just so hard to not to want every possible second with them and so we keep pleading with God for more.

"For with God nothing will be impossible.” - Luke 1:37

Lilly has a cold :(

Photo credit: Steve Rubin Photography

Lilly came down with a cold in the middle of the night last night. She's still sleeping now but is restless and congested. Please please pray that she will get better quickly. When Lilly gets sick she tends to go downhill very quickly and ends up in the hospital emergency room.

If she doesn't get better quickly, we'll need to postpone her heart cath scheduled for next Thursday. (Which we need so that we can get her heart surgery scheduled. Surgery which she needs so that her heart can handle her illnesses better!)