We love because he first loved us. (1 John 4:19)

Thank you so much for all of the encouragement and advice regarding Nora’s lungs! I hooked her up to the pulsox machine a few times throughout the day just to make sure she was still okay with the ¼ liter. Each time she passed with flying colors whether she was awake, eating, or sleeping! I’m so proud of her!!

I didn’t get many pictures today (or sweet videos) for some reason, but the above is officially from today! I’ll be sure to take a bunch tomorrow to make up for today.

Late this afternoon I was contemplating what our next plan of action would be regarding Nora’s little lungs. We have the sleep study scheduled, but that (to
my knowledge) will not offer any insight to the CAUSE of the “chronic lung disease” (?)

Out of curiosity, I hooked Nora’s little foot up to the pulsox machine and turned the oxygen down to ½ liter from the ¾ liter she’s been on. After about 45 minutes it was plainly obvious that she was able to withstand being at a lesser amount. I suppose I had accidentally determined that on our walk the other day that Nora CAN be without, but I never knew where her sat levels were. In the past while being monitored, she could get down into the low 70s before it would be obvious in her coloring. For most of the evening Nora’s sat levels never went below 96 while on ½ liter!! We then lowered it to ¼ liter, which is where she is now, and she continues to stay up in the high 90s!!

Red = oxygen saturation level, Green = heart rate

I’ve been walking on clouds all evening and will assuredly fall asleep with a big fat friendly smile on my face tonight! (Nurses and friends continue to stay the nights with Nora to allow William and I the LUXURY of sleep!)

This is just my theory – and I would love some more input from all of you nurses, doctors, and medical professionals, etc. out there: Could Nora’s lungs have just been simply underdeveloped which then caused that scary blue spell at about 12 days old (which is when she went on oxygen)? Now, with having been on the oxygen for as long as she has, could that be the cause of whatever is showing up in the recent xray as “consistent with chronic lung disease”?

We appreciate any and all advice!

For I know the plans I have for you,” says the LORD. “They are plans for good and not for disaster, to give you a future and a hope.” (Jeremiah 29:11 NLT)

Jesus replied, “You don’t understand now what I am doing, but someday you will.” ( John 13:7 NLT)

No… Sometimes I feel like I don’t understand at all. Not so much as it pertains to Nora right this instant (as she’s sleeping peacefully in my arms), but the horrendous calamities that so MANY people are faced with. The path I’m stumbling along seems like a smooth stretch of brand new asphalt compared to the paths that some other families have been thrown down. I cry for these people. I pray for peace to encompass them. No matter what we’re faced with in this broken world, I find incredible comfort that SOMEDAY we’ll understand.

Today’s pictures of the sweetest 8 week old:

During the school year I like to slip special little notes in my kids’ lunches just to let them know that I’m thinking about them and to hopefully brighten their day while they’re away from me at school. I don’t include a note every day, as that would diminish the value of them. Nor do I leave notes to prove myself to them or to win their love. It’s a simple gesture of my love, expecting nothing in return.

In much the same way God has been putting little love notes in my “lunch”. Today I got quite a few of them on the way to and especially during Nora’s appointment today.

As long as I can remember I’ve assimilated the sight of three birds with the Holy Trinity. I can’t quite remember how or why that came to be – it just IS. During that seemingly eternal weekend that we were awaiting the amniocentesis results I was listening closely to the words of the “Don’t Worry… About a Thing” Bob Marley song that I had looped on my computer,

“Rise up this mornin’, Smiled with the risin’ sun, Three little birds Pitch by my doorstep Singin’ sweet songs Of melodies pure and true, Sayin’, (“This is my message to you-ou-ou:”)

Singin’: “Don’t worry ’bout a thing, ‘Cause every little thing gonna be all right.” Singin’: “Don’t worry (don’t worry) ’bout a thing, ‘Cause every little thing gonna be all right!”

Three little birds? Did I hear that correctly?? And they’re singing songs of melodies pure and true with a message to me telling me not to worry and that every little thing is going to be all right?? um… WOW, as chills run down my spine!!!!!!! I’d heard the song at least a hundred times plus, but never really bothered to listen to any part of the lyrics past, “Don’t worry about a thing, every little thing’s gonna be all right.” I put the song on my computer to loop over and over again because of that line in the lyrics and to hopefully talk myself down “off the ledge”. It was then that I discovered the rest of the lyrics. That particular “note in my lunch” from God was really pretty powerful then and still is.

When they brought us back to the room today where Nora’s swallow study would take place my eyes were immediately drawn to the walls. A big lump formed in my throat and tears welled up in my eyes as I stared at the sequence of THREE LITTLE BIRDS (doves, at that!!!!) on the wallpaper border that encircled the room. I had to count them again… Sure enough, one, two, three, the Father, the Son, and the Holy Spirit surrounding me and William, surrounding our precious daughter with their message, “DON’T WORRY, ABOUT A THING. EVERY LITTLE THING IS GONNA BE ALL RIGHT!!!!!!!!” Nora passed with flying colors! There was no aspiration seen as she delightfully (well, ALMOST delightfully) drank her bottle of barium. I couldn’t have asked for her to have been more cooperative. I give thanks and praise to that part of answered prayer! Still no idea as to what is causing the signs of chronic lung disease that were noted in last week’s X-ray. Until we find that out, I trust that every little thing is going to be all right. I’ll try not to worry about a thing.

Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. (Philippians 4:6 NLT)

Nora goes tomorrow morning for her swallow study. PLEASE continue to pray that that all goes well. I’m a little on edge about that, always fearful that I’m going to hear something that makes my blood run cold. I need to go back and read some of the previous posts I’ve written about worry, and feeling victimized. It’s so stupidly easy to fall back into that fruitless mode of thinking.

I will admit, I haven’t been the easiest or nicest person to live with these past couple of days. The existing layer of stress infused with a maelstrom of hormonal issues does not bring out the very best in me.

Always be humble and gentle. Be patient with each other, making allowance for each other’s faults because of your love. (Ephesians 4:2 NLT)

Even though I was probably the furthest thing from humble and gentle today (except when I was sleeping) – my dear sweet, beloved, exceptional, amazing, precious husband has been nothing but patient with me, making allowances for my many faults because of his obvious love.

William, you are a true man of faith not only in your words, but your actions. I love you. I love you. I love you. You’re an amazing husband and Daddy and I’m sorry if I made you feel otherwise.

Just one picture for today! It was a busy day and Momma is TIRED! So grateful for the help today so we could go to Greta’s recital and the nights so we can sleep! Nora is doing good, and is as deliciously sweet as ever!!

He gives strength to the weary
and increases the power of the weak.
(Isaiah 40:29)

We have the swallow study rescheduled for Monday. When it was originally scheduled, we didn’t realize the urgency of the matter, which was why it was so far off. In the mean time I’ve figured out that Nora does much better when she drinks her bottle in a completely upright position vs. just being propped up a little. That prevents a lot of the coughing and sputtering, aspirating(?). Hopefully we get some answers Monday.

When I was younger, I casually entertained the idea of going into auto mechanics. Not because I was that interested in cars, but so I could be knowledgeable when I took my car in for repairs instead of subjecting myself to the risk of being being swindled. Or I could fix it myself. The same concept never occurred to me as it related to healthcare. I can’t exactly say that it’s any big regret that I did not pursue a career in the medical field (or auto mechanics). I realize we all have our different talents and callings in life. Neither of those are mine. Which is specifically why God puts other people in my life who DO know what they’re talking about as it pertains to Nora. I sooo appreciate all of the comments and messages, and everyone who has made themselves so available to help us. It’s so comforting to have input from qualified individuals other than just what the hospital tells us. I like the security of being able to request things that otherwise weren’t immediately offered or made available had I not been tipped off. It’s also very nice that I don’t feel like I have to call our doctors every single second with sometimes little, but genuine concerns. Thank you all of the nurse friends, doctor friends and Moms who have been down this road, or similar with your own children. What ever would we do without you!!??

Nora and I went for our longest walk ever so far of 2 miles this afternoon! Of course I chose to do this on one of the warmer days of the week at the hottest time of the day. Nora didn’t seem to mind! Nor did she seem to mind that her ditzy mother had the oxygen tank accidentally set on ZERO airflow the ENTIRE time!! For almost an hour she was without the oxygen flow, yet she was not lacking in color at any point on our walk or when I took her out of her stroller once we got home. It wasn’t until later in the evening when I was putting the tank away that I even realized what I had done!! Nora’s Guardian Angel must be very diligent and always on guard to cover for me when I screw up! Thank you!!!!!!!!!! Clearly, it’s a good thing that I am NOT in the nursing / medical field. {cringe!?}

Prayers for Nora’s little lungs and heart are greatly appreciated!

The one who plants and the one who waters have one purpose, and they will each be rewarded according to their own labor. For we are co-workers in God’s service; you are God’s field, God’s building. (1 Corinthians 3:8-9 NIV)

It’s been a long day and an especially long evening that showcased sitting in traffic for over 45 minutes. Greta had the dress rehearsal for her recital this evening. I went with her and Nora stayed home with Daddy and Gavin.

Nora had an appointment with the ENT specialist this afternoon. We weren’t sure if I’d make it back in time to get to recital practice so William took her. Gavin accompanied them to keep an eye on his little sister. I was told that the doctor looked at her ears and that Nora was extremely angered with that whole procedure. Basically it was determined that her ear canal is very tiny, but it’s there! (which goes along with Nora’s theme of things!)

Here are a couple of pictures from today. The first one is of the rising sun glowing on Nora’s sweet fuzzy little noggin this morning. The second one is Nora and Gavin at the ENT appointment.

Sing to the Lord , for he has done glorious things;
let this be known to all the world.
(Isaiah 12:5 NIV)