Nora – 52 Days Old

Posted on June 8, 2012 by aleisa

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)

Nora – 51 Days Old (Aleisa – 14,246 Days Old)

Posted on June 7, 2012 by aleisa

Today was a day of mixed emotions, not in any particular order which diverged into a bit of a roller coaster ride. Nothing extreme with loops and turns, thank God.

Gavin and Greta had a nice day away from home with friends. It was nice to spend a day (my birthday, no less!) without refereeing their teasing and fighting. I guess that’s all part of being siblings, but it has certainly gotten old a long time ago! I’m running out of ideas to keep them entertained and occupied when they are here. A trip off to the zoo or the library was something I used to totally take for granted.

Other high points were the surprise visits from friends and the planned visit from my Muthr. (That afforded the luxury of more than 30 seconds in the shower! Aaahhh.) And a long talk with Karen Santorum who is always such an insightful pleasure to talk with.

The dip of the day was the phone call from Children’s Hospital calling with the results from Nora’s chest x-ray. I’m getting pretty good at deciphering what the news is going to be based on the caller’s tone of voice. And no matter how hard I try to change the outcome of what they are about to say with a chipper and upbeat tone of voice in response, the bad news comes barreling forth anyway. This news wasn’t anything that knocked me down to my knees, but not exactly what I wanted to hear either, mainly in part because I’m not 100% clear on what it all means. Based on the X-rays from early May compared to the ones taken this past Tuesday there is an indication that Nora has “chronic lung disease”. There were some areas of opacity in the X-rays that show this to be the case. It could be that Nora is aspirating her formula into her lungs which is causing the problem. The swallow study will answer that question, and the sleep study will offer some more answers. Both of those are scheduled for July. If she is aspirating, they will try to thicken her formula to see if that helps any. The good news, I guess is that maybe the aspiration is the answer to our question of why she desats. If we can fix the aspiration, maybe that in turn would fix the desats? This is just me guessing because I really don’t know. (!!!??)

After that phone call I was feeling a little down and out of sorts, audibly reminding myself that IN GOD I TRUST, IN GOD I TRUST, IN GOD I TRUST. He will never let go. In my quiet moment of prayer I was wishing I had someone there with me in addition to God’s presence. That was of course when the doorbell rang. God sent my friend Jamie as the perfect remedy for my dour mood right when I needed her. There are way too many instances of the right people at the right time lately for any of it to be coincidence. Makes me teary to think about it.

As the day draws to a close I’m so thankful for God’s grace and mercy, my hubzbind, my kids, my family and friends and for everyone out there praying for this sweet bundle of love.

“Do not be anxious about anything,but in everything,by prayer and petition,with thanksgiving,present your requests to God. And the peace of God, which transcends all understanding,will guard your hearts and your minds in Christ Jesus.” (Philippians 4:6-7 NIV)

We declare God’s wisdom, a mystery that has been hidden and that God destined for our glory before time began. None of the rulers of this age understood it, for if they had, they would not have crucified the Lord of glory. However, as it is written:
“What no eye has seen,
what no ear has heard,
and what no human mind has conceived”—
the things God has prepared for those who love him—
(1 Corinthians 2:7-9 NIV)

Nora – 50 Days Old

Posted on June 6, 2012 by aleisa

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)

Nora – SEVEN WEEKS OLD!!

Posted on June 5, 2012 by aleisa

Oh what a wonderful day! We’ve got ourselves a regular little Heavyweight here! Little Miss Six Pounds Five Ounces!!

The pulmonologist, Dr. Chini was wonderful and showed genuine concern for our little girl as a person – not just a diagnosis. As of yet we do not have any definitive answers as to why she was desatting relatively quickly when taken off of the oxygen. However, we were very pleasantly surprised and optimistic when Nora was able to stay at a reasonable saturation level today for the half hour that she was being monitored off of the oxygen flow!! They did dip down into the 70s a couple of times, but she was quickly able to bring it back up. I know that Nora reacts to her Mommy and Daddy’s voices and loving caresses, but it brought tears to my eyes to see a machine validate that. Any time we talked to her or stroked her head her oxygen levels would rise right up. How sweet it is to love this little girl and to know that she loves us right back.

In addition to the O2 monitoring Nora had a chest x-ray today (that she was NOT at all happy with!!), and is to have a sleep study and a swallow study done within the next few weeks. The sleep study involves an overnight stay and will monitor her breathing / oxygen while she sleeps. The swallow study will track the path of her milkies as she swallows to determine if she is aspirating any into her lungs. She will also have some blood work done to check the carbon dioxide levels in her blood (blood gas panel) and another test, which if I remember correctly is a renal test as it pertains to possible hypertension?

I’m so relieved to have left there today without any bad news!! God hears our prayers loud and clear. I give thanks and praise!!!!!!!!

Nora celebrated her 7 week birthday today with a warm relaxing bath when we got home and excessive snuggles with Mommy. Here she is in a pretty new party dress!

On another note, I want to ask for continued prayer for the Mummert family on their journey after the loss of their little Harrison, who had trisomy 18 as well. While our stories had different outcomes, they are alike in that our children are working together to bring so many people closer and into a relationship with God. One from heaven and one on earth, making sure they have all their bases covered! If you haven’t already, I encourage you to read their story and daily updates at www.harrisonjamesmummert.com. I especially enjoyed the photos from today – a beautiful celebration of Harrison’s tiny but mighty little life. God bless you, James and Emily!

Through the praise of children and infants
you have established a stronghold against your enemies,
to silence the foe and the avenger.
(Psalm 8:2 NIV)

Nora – 48 Days Old

Posted on June 4, 2012 by aleisa

It was a good day today, but I’m glad that it has come to an end. Nora was a little fussier than usual, possibly on account of her stuffy nose and not being able to breathe so well. Some saline drops seem to have helped out considerably and she’s sound asleep right next to me breathing comfortably. When Nora is fussy, she likes to be held and rocked, which means I’m not able to get much else done around here. With an 8-year-old and a 6-year-old running amok, you can only imagine what condition the house was in this afternoon. Gavin has been grounded from all electronic devices for 2 weeks for hitting Greta and because I really didn’t think that one out too clearly when I involuntarily screamed the punishing decree over my shoulder from the passenger’s seat.

We go bright and early for an appointment with the pulmonary specialist at Children’s Hospital. Again I’m asking for prayers for answers and solutions in regard to Nora’s little lungs.

Here are some pictures of my sweet little thing from today:

“Hmmm… Should I order milkies… or the milkies… “

“Yes, I think I’ll have the milkies, please.”

I have to apologize to so many people – I discovered this subfolder within my Messages folder on Facebook called “Other”. Just out of curiosity I clicked on that last month and discovered messages from people all the way back from September of last year!! Doh! Now I just have to remember to check in that folder every so often so people don’t write me off as some kind of jerk! Among those messages was one from a woman who had suffered the unthinkable loss of triplets. Her little girl succumbed to trisomy 18 while still in the womb at 16 weeks. Her little boys were born at 25 weeks, one of which lived for 44 days, the other 66 days. Despite what she had been through only 3 years ago, she was writing to offer me encouragement. She included a beautiful analogy of God’s goodness with a reminder that HIS ways and timing aren’t always what we want and when we want it. In her letter she shared with me something she had written shortly after she lost her triplets. I asked her if I could share that on the blog and she was agreeable. Her son Noah was almost 2 at the time:

Noah is on his tiptoes, reaching for the doorknob to the pantry, crying for a “key-key” (his word for ‘cookie’). His ears are deaf to my “not now – dinner is in 20 minutes.” His single focus, the cookie, is at the heart of his will. There is no way in his 22 month old brain he can comprehend why a fistful of graham crackers does not a balanced dinner make. Yet, I try over the pleas, to explain that if he would be patient for a few more minutes, what he will be getting is so much better for him than a “key-key”.

In the same way we cannot understand what our Heavenly Father has in store for us in the future. Our immature wills can only focus on the here-and-now, and what we want immediately. I prayed for days and weeks at Wyatt and Jack’s bedsides in the NICU, crying for God to give me what I wanted – a baby boy to take home. I bargained, “I understand they had a rough, early start, and I am willing to take on a child with special needs if you will just get them out of the NICU and let them come home.” I bargained further, “I understand Wyatt had heart problems and You needed him home with You…PLEASE just let Jack get better.” Yet, God had a bigger plan for Wyatt and for Jack. God has a bigger plan for me, Greg and Noah. While I’m focused on the here-and-now, pulling on the pantry door for a “key key,” God is planning an amazing, soul-nourishing feast for us. Until then, I cling to my faith and the promise that “in ALL things, God works for the good of those who love Him and who have been called according to His purpose.” (Romans 8:28)

Thank you so much, Kelly for sharing that with me and for allowing me to share that here. I get a big lump in my throat every time I read it. God can be so misunderstood by us mere humans, just as Noah misunderstood you. God LOVES us. He’s not up there / out there with a big lightning bolt in his hand waiting for us to screw up and then throw it down at us to make our lives miserable. Nor are we random ants under the magnifying glass on a hot summer day. THERE IS A BIGGER PICTURE! Unfortunately, we don’t always realize that. Even if we do “get” that – we often need reminding. I know I do!

What ever you are going through in your lives, trust that God loves you and that he has great plans for you. I promise, promise, promise you that your life will be much less burdensome when you change your way of thinking.

No eye has seen, no ear has heard, no mind has conceived what God has prepared for those who love Him. (1Corinthians 2:9)

For I know the plans I have for you,” declares the Lord , “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11 NIV)

P.S. I hope I didn’t keep you up too late tonight, sweet Ethel! I’m on night shift tonight and had lots of very precious interruptions! 😉

Nora – 47 Days Old

Posted on June 3, 2012 by aleisa

Here is a rare peek at Nora’s sweet, but sad little face without all the stinkin’ tubes. Mommy had to swap out the tegaderm stickers today. They get a little rank after awhile with all the milkies spitties.

Ughhh. Glad that's over!

She had another busy day today! Brunch in the morning with aunts, uncles, cousins, Oma, and Nana and Papa! And then two walks today – one very long walk with Mommy and another in the evening with Daddy to the mailbox. All that activity makes for a real tired little girl!

Now faith is confidence in what we hope for and assurance about what we do not see. (Hebrews 11:1 NIV)

Nora – 46 Days Old

Posted on June 2, 2012 by aleisa

Yesterday evening while I was snuggling with Nora, I glanced down and noticed that she had my I WILL CARRY YOU necklace pendant firmly in her little grasp. *tears!* I swear that wasn’t in any way staged!

This evening Nora visited our church for the first time. It was so good to be back after having been absent for so long (even if we did have to sit in the Cry Room because a certain little somebody was a little fussy fuss!). Fortunately we have the ability to watch the services from past weeks online (Crossroads), but it’s just not the same as being there in person. Kirk Perry (president of global family care for Procter & Gamble) was the guest speaker this evening. He talked about what it’s like to integrate his faith in the business world. While I’m not so much in the business world as a stay at home mom, much of what he touched on was still very relevant. I was particularly inspired by the myths or common misconceptions of what it means to live a faith based life. I would have taken notes but for the fact that I was swaying back and forth and bouncing a grouchy little baby girl in my arms! One of “myths” that stood out to me was that our faith is something that is meant to be private. Many people, including myself at one point, believe(d) that you go to church on Sunday and then there is really no need to talk about it or utilize your faith past that point. I remember how awkward it was in my driver’s ed class 20-something years ago when our driving instructor insisted on listening to a Christian rock station in the car. “Lame-o!!!!” I remembered thinking. I was under the impression that there was no need or use for that kind of stuff unless there was something NQR with ya, or that you were some kind of Bible beater! (in retrospect, why WOULDN’T a person in charge of teaching a car full of moody teenagers how to drive be listening to Christian music, whether they were religious or not!!!???) *wink* Fast forward many years later where the surly 16 year old is now a “bedraggled homemaker”, tried and tested. I literally LOL to think that I once felt that my faith was something that was private!! No, of course I’m not going to shove my faith down anyone’s throat or threaten you that you’re going to go to hell if you don’t believe and repent (through a megaphone on a street corner)! I don’t think that is a very endearing approach, and I hope I’ve never come across that way in any of my posts!! I hope that by being honest and open about my life and Nora, sharing all the ways that God has been ever present – maybe a seed is planted. A seed that will someday become the inception of faith in someone else’s life. I no longer harbor any fear of “what will people think??”. God is so very good, real, cool and hip to me, so much greater than the risk of someone whispering behind my back or thinking I’m some kind of wackjob Bible beater. I can’t possibly sit here and pretend I had anything to do with the outcome of this beautiful love story, or the fact that it has reached and touched thousands of lives. To God alone be the glory. I can’t be quiet about that!

In summary, it was a great service. I’m glad we decided to go at the last minute. We also met some new friends tonight who have been following our blog. It was so nice to meet you Caitlin and Nicole! And so nice to see you, Amanda and family!

“You are the light of the world. A town built on a hill cannot be hidden. Neither do people light a lamp and put it under a bowl. Instead they put it on its stand, and it gives light to everyone in the house. In the same way, let your light shine before others, that they may see your good deeds and glorify your Father in heaven. (Matthew 5:14-16 NIV)

On an unrelated topic, I was distressed upon noticing this warning label on Miss Nora’s medication today:

I have no idea how I’m going to break it to her that she’s no longer able to operate the crane trucks. #majorbummer # whattodo

Night night!

Nora – 45 Days Old

Posted on June 1, 2012 by aleisa

Today was a lazy, relaxing day. The cold and rainy (aka CUDDLE) weather dictated that we all stay in our pajamas for the day. Nora, however wanted to change into one of her chic new outfits later in the day. You never know when paparazzi (Mommy’s phone camera) is going to show up!!

Bright eyed and bushy-tailed at 6am!

Stretch Norastrong

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

Nora – 44 Days Old

Posted on May 31, 2012 by aleisa

I can no longer regard Nora’s trisomy diagnosis as the great tragedy that I once did. Back in January and for months after, I didn’t understand how something like this could happen to US. I now see very clearly that God knew exactly what He was doing! I’ve been given the opportunity to stand back and see glimpses of the Big Picture, and WOW is it ever gorgeous! This isn’t something that just happened to William and I, it happened to thousands and thousands of people. My faith and spirituality have grown immeasurably these past four months, but it’s not just me. There are almost 2000 comments I can look back on that would suggest Nora has had a profound effect on MANY. What if the difficulties and tragedies we are dealt in this life aren’t meant for just us personally, but are designed and authored to impact, inspire, and cultivate others? To look at it that way certainly changes my self-centered perspective, and diminishes any self-pity I might have had. The “Why would God do this to me?” question suddenly becomes null and void. In a state of vulnerability and desperation I allowed God to use me as His instrument really because I just. didn’t. know. what. else. to. do. It would have been really nice to see how beautifully everything would unfold back then, but I couldn’t have had a clue. I felt I had no other options but to take the blind leap and give it all to God. Blind leaps of faith can be scary as all hell (speaking from experience), but the splash will be huge and the ripples just might carry to the ends of the earth, impacting and inspiring thousands. Can you trust Him? YES. God can list me as a reference on His resume any day!

But rejoice inasmuch as you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed. (1 Peter 4:13 NIV)

Here are pictures of Nora from today. Greta was so proud of herself that she can hold Nora while standing up! She’s such an awesome big sister and such a help to Mommy!