Nora – 95 Days Old

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Hmmm... Sleepies? Or milkies... Hmmm...

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(Snora)

I will extol the Lord  at all times;
his praise will always be on my lips.
(Psalm 34:1 NIV)

(even when we’re sleeping!!)

We have a very long, but very exciting day ahead of us tomorrow! Please keep us in your prayers for safe travels! ūüôā ūüôā ūüôā

Nora – 94 Days Old

I’d meant to do a followup on yesterday’s post, but now it’s so late in the day that I may as well just go on to Day 94!

It was the strangest thing waking up this morning. I laid there in my semi-awake state bracing myself for the lead boulder that usually comes crashing down onto my chest. It wasn’t there today! I waited and waited — nothing. Aaaah!

As I stated yesterday, I was at peace with the decision we were given regarding Nora’s ineligibility for heart surgery. I will try to give a summary of the hows and whys as best as I can in my very¬†limited medical intellect.

We sat there waiting for probably only a few minutes, but what seemed like lengthy hours for Dr. Hirsch to come in. As he finally entered the room, I was intent on studying his body language trying to ascertain what the answer was. He seemed confident and he was smiling.¬†There was no indication that he was about do deliver us any bad news.¬†I was nervously hopeful, hanging on to his every word, his every movement, barely able to breathe.¬†He went through his list of questions for us, wanting to know if anything had changed since last week with Nora.¬†Other than her cold, there was nothing new to report. She was still not showing any symptoms of congestive heart failure. By the way her heart is operating, theoretically she should be experiencing at least some symptoms¬†— but she’s not. After a productive debate with the surgeons, it was concluded that to perform surgery on Nora right now may end up causing more harm than good. It could potentially open up a Pandora’s box of trouble.¬†This decision is the same decision that would have been given to a child without trisomy 18. I do not believe that Nora was discriminated against in any way. Our next step would be to administer sildenafil (while in the hospital under close supervision) which would¬†relax the blood vessels in¬†her lungs.¬†They need to see if by doing this she would¬†then show symptoms of congestive heart failure.¬†This would indicate whether or not the VSD is causing her pulmonary issues.¬† If the VSD is NOT causing her pulmonary issues, the surgery would be pointless.¬† Her heart is otherwise doing its job. The VSD by itself is not a fatal condition.

I hope I explained this correctly? Kinda wish I would have gone to med school. (If anyone needs any critical answers or emergency explanations in regard to art history, I might be able to help you out.)

I can’t tell you how much I appreciated Dr. Hirsch’s genuine concern and his compassion for us and especially for Nora. My heart swells with gratitude. He is not only an exceptional doctor, he is also an exceptional man. The prayers that the right people would be there at the right time for us continue to be answered.

It was suggested in a comment yesterday that sometimes the not knowing is the worst part, and yes, I would have to agree with that in this instance!!! A comfortable awakening with the unmistakeable presence of peace was¬†upon me this morning. Then the¬†confirmation that we were headed down the right path came about in the form of the THREE woodpeckers tapping on our roof this morning. One? Okay. Two? Sure. But no.¬†There were THREE.¬†Too¬†uncanny to be coincidence!!??¬†God couldn’t be more obvious in our lives than if He were sitting here at our kitchen table.

We have a great week planned ahead of us without any hospital visits – a much needed respite!

Here are some sweet pictures from today!

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Women of the Tiny Hat Society

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Muthr cuddles

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Compatible with love…

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… and with milkies!!

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Winding down the day with an evening walkies.

Goodnight and thank you for your love and prayers!!

Nora – 93 Days Old

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While we didn’t get the answer we were hoping for this morning, we do believe that we got the answer we were praying for, which is God’s will. Surgery is not recommended at this time, nor would it be for a chromosomally normal baby. It might be something we revisit in the future, but for right now we are regarding every day with Nora as a gift. We completely trust our amazing cardiologist, Dr. Hirsch and of course our incredible God! Thank you so very much for your continuous, ongoing prayers. I never would have imagined being THIS at PEACE after receiving news I thought I never wanted to hear. Thank you, and all praise be to God!

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I will give more details in a Part 2 during daylight hours… Mentally and physically drained, but resting easy in God’s loving arms, fully encompassed in peace!

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Goodnight!

Nora – 92 Days Old

I’m sitting here propped up against the wall in our basement listening to the radio after just having assembled an IKEA shelf in a record time of 1 hour! Today was certainly a better day than yesterday. I’ve concluded two things:

1) It’s not a good idea for me to be completely alone. It’s too easy to let my dark thoughts fester into an all out catastrophe. This is a whole new reality for a self-proclaimed recluse, such as myself, to adjust to. Now, more than ever, do I need my family and community of friends, even if it’s just on the other end of the phone. I need to be the one to pick up the phone when I feel things spiraling out of control. Often times I’m too stubborn, prideful,embarrassed, or just don’t want to bother anyone or bring anyone down with me. I like to pretend I can handle it all on my own – and the next thing I know I’m hyperventilating in a lake of tears. Not working out for me to be alone, especially when Gavin and Greta are away.

2) Maybe God doesn’t come rushing down and fix all my problems right away in the way I’d like Him to because He wants me to learn to trust Him and to figure it out on my own that He is right here with me. He wants me to learn about Him by staying active in His Word, “Pick up the Bible! Read about Me and who I am! I am ‘I AM’!”

{God replied to Moses, ‚ÄúI AM WHO I AM. Say this to the people of Israel: I AM has sent me to you.‚ÄĚ (Exodus 3:14 NLT)}

In the same way I’ve let my own children cry themselves to sleep on occasion when they were babies and toddlers. It pained me terribly to hear them crying. I wanted to rush in and bring them in bed with me. But I also knew that they needed to learn how to fall asleep on their own – and no, they couldn’t sleep in bed with me! It was never because I didn’t love them! They eventually figured it out that I was always just in the next room and that I would be back in to get them when they woke up. Their little tantrums grew shorter and shorter and now at 6 and 8 years old they certainly know how to fall asleep on their own. It’s getting them IN TO bed that has become the big issue in recent years!!

I’m still the spiritual infant in all of this. God is sometimes right in the next room with His head in His hands listening to me. It pains Him to hear me crying, but He’ll be in to get me after I’ve learned to rest in Him. He’s waiting for me to trust Him and to know that He’s got my very best interest in mind.

Today I felt God standing next to my “crib”, patting me on the back and whispering that it’s all going to be okay, “Stop worrying and REST your mind! I’ve got this!” He hasn’t reached in to take me out yet, but at least I know He’s there and I am soothed.

God probably wants to clear up any misconceptions that may or may not be out there as well. I am no saint, I have real human emotions, I don’t have it all together. I am in fact an ordinary person allowing God to do extraordinary things with and through me.

Here’s Nora:

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Oh, hi! It's me - Nora!


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Rumor has it that I was a little fussy yesterday...


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I had lots of boogies and my little cheek got all red and chapped.


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I was NOT happy about any of this.


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And my tear duct is all jacked up too. My poor eye!


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Things were a little bit better today though.


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I have my doctor's appointment tomorrow morning. Please pray for my Mom and Dad. While they might be scared for me, God already had a plan for me before He even created the universe!

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)

Nora always tells it like it is:

Nora’s appointment is at 8:30 tomorrow morning. Please pray for us!!

Nora – THREE MONTHS OLD

How quickly a 2 ¬Ĺ hour crying jag can take everything I’ve been so thankful for and throw it right out the window… And how horrible and selfish that seems to me as I just typed it out.

Nora has a cold, which makes breathing and eating difficult. Sensing my anxiety I think is making things much worse for her. She cried so hard she turned blue. Her clogged tear duct isn’t getting any better either. A trip to the pediatrician was in order. After a lengthy listen to her lungs we were instructed to get an xray up the street at the Children’s Hospital outpatient center. It was to ensure there wasn’t something else serious going on. Fortunately we didn’t need to wait too terribly long for an answer and it was determined that there was no pneumonia – praise God!!!!

It’s been a very long day and I’m glad it has finally come to an end. I love this little girl beyond belief – but I needed a little break from her this evening. It was good to get away for a couple of hours to the back deck of a friends’s house for a girl’s get together.

As if a crabby, colicky baby isn’t trying in and of itself – we have this whole other cardiac, lung, trisomy 18 issue compounded into the mix. I spent a bulk of the day angry and frustrated with God, feeling alone and defeated. “Everyone else can have normal babies… Why do I have to deal with this??” “I can’t do this… This sucks…” “Why why why why why?????” … and on and on whined my spoiled inner-being.

Remember when I was so thankful just to be able to hear that first cry? Remember how exhilarating it was to be able to give her tiny little body a first bath? A first walk to the mailbox? And on and on and on… I have been more than beyond blessed and now here I am taking it all for granted and bitching about it.

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I wish I had a better 3 month birthday to report, but it is what it is. I can only hope for a better tomorrow or pray that it is at least bearable. I told God today that I really could do without any more lessons in patience… but apparently He thinks otherwise. Please pray that sweet little Miss gets over her cold soon and that nothing else gets tracked in here.

Heard this song today for the first time as I was leaving the pediatrician’s office – made me WEEP…

As much as my human heart may lash out at God right now, my soul will forever give him thanks and praise.

Nora – 90 Days Old

Today was another relaxing, uneventful day. Gavin finally made it out the door this morning with his Dad for a day of hard earned wages at the sign company. That left just the girls behind while the menz went off to work.

Gavin and Greta constructed an enormous fort upstairs in the loft yesterday that they intended to sleep in last night – but of course it never works out like that. They both wound up in their own beds at 11:30 pm after “irreconcilable differences”. The fort still remains and Greta was excited to show it off to Nora. We hooked Nora up to one of the portable oxygen tanks and brought her upstairs to see what the fort life was all about.

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Nora trying to guess the secret password at the fort's entrance. 'Um... Milkies?'

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She finally got in!

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There wasn’t too much to do in there after awhile, so we went back down to the Milkies Caf√©.

The KLOVE Encouraging Word today was a verse out of second Corinthians. It isn’t a verse I’d heard before and it was especially thought provoking. It reads:

For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever!
(2 Corinthians 4:17 NLT)

I was slightly taken aback to read that something I’ve often regarded as THE single most difficult thing I’ve ever been faced with seems to be reduced down to a pesky mosquito bite in God’s terms. Instead of assuming that this verse must be talking to someone who misplaced their car keys — CERTAINLY not me — I heaved a sigh of relief to look at my troubles in a different light. Yes, apparently this applies to me too. I can’t find any microprint disclaimers anywhere. Small and temporary? Really? I already see the production of glory, but to imagine that it will vastly outweigh all of this pain and it will last FOREVER made chills run down my spine and tears stream down my cheeks. What, o what in the world is God doing, I can’t begin to imagine… but I have a feeling it’s going to be AWESOME. Permanently awesome. THIS. ISN’T. ALL. THERE. IS.

Nora – 89 Days Old

And so begins another week…

I’m grateful for a restful, worry-free weekend and feel that I have a renewed sense of hope and peace about everything. I’m trying not to get myself too worked up about Thursday. Again, what. will. worrying. solve?? Nothing. I strive to stay focused in the present and enjoy these peaceful days.

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Sisters lounging around

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Greta takes such good care of her little sister

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A visit from MeeMee today! (William's mom)

I look over at this precious bundle of sweet baby Nora sound asleep next to me. She sleeps peacefully, radiating a little dream smile every so often (she dreams of milkies).

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When I look at all 7 lbs. 8 oz. of her and think about how much I love her, it almost physically hurts. It is surreal to me to think that there could ever possibly be a greater love than a parent has for their child, yet that is God’s love for us as His children. We are made in His image which is why we are able to experience and feel love, but it’s probably a sort of LITE version. Were the full version installed on our primitive operating systems it would most certainly result in a system failure. We couldn’t handle it. It would kill us. That amazes me even though I can’t quite wrap my head around it.

Also programmed into our circuitry is the longing for eternity. All you have to do to see evidence of that is take a stroll through the grocery store or simply turn on the TV in the comfort of your own home. An endless barrage of age defying products, procedures, tips and solutions around every corner and on every other channel. Everyone wants to look 21… (myself included)! Were I to admonish these products or the people that use them, I’d be the biggest hypocrite alive! Stop for a minute though and think about this quest for eternal youth. It’s not just a passing fad or something that has come about in recent years. There has never been, to my knowledge, an era or culture as a whole that has embraced aging. No one is going out to get fake crows feet or spending hours in the salon to get their roots dyed gray. (?) (Correct me if I’m wrong!) We want to stay young and live “forever” because that is how God wired us! Eternity is so deeply rooted in our hearts, yet for many, this is just simply a way of life without bothering to think about it! Honestly, I myself hadn’t ever really given it a second thought until recently.

Perhaps this is why it pains us so deeply when we lose a loved one. In our limited reference of this world it may SEEM like this is all there is. This IS our “forever” as we know it. As Christ followers we have been given the promise of eternal life. But because eternity is only a concept to us right now in our limited minds, we don’t and can’t fully grasp it. It is uncomfortable to lose the people we love to a concept that doesn’t fully make sense to us right now, even though we fully believe in it.

So here we all are doing the best we know how with what we have been given. We love, we live, we experience heartaches and the pain of loss. Then one day (in what will then seem like the blink of an eye) this will all be behind us. The “veil” that protected us on this earth by allowing us to live in ignorant bliss will be torn. No longer will we need the protection of the concept of time. Our quest for eternal youth will suddenly make total sense. And the full version of God’s love will be fully compatible with our upgraded operating systems. I believe in that, I place my hope in that. THIS. ISN’T. ALL. THERE. IS.

He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil‚ÄĒthis is the gift of God. I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.
(Ecclesiastes 3:11-14 NIV)

If only for this life we have hope in Christ, we are of all people most to be pitied.
(1 Corinthians 15:19 NIV)

Nora – 88 Days Old

I’d forgotten to scour William’s phone for cute pictures over the past few days. I found some sweet images, plus some of my own.

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Thursday evening - Nana, Gavin and Mommy loving on NorNor.

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Friday evening. We were given a night out with the big kids while my dear friend Paula Miller offered to stay with Nora while we went out. William and I took the kids to our friend Brian's house. Relaxed by poolside while the kids swam. Notice the little rainbow in the sky just above the tree line!

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Milkies!!!!!!!!! Where's my order????

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Mmmmmm.mmilkieeeesssss!!

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I happened to glance outside and saw the 3 of them on the railing. Happened to have my phone camera accessible!

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up.
(Galatians 6:9 NIV)

Nora – 87 Days Old (2nd Post)

If you didn’t see the previous post,¬†that is where Nora pictures (and even a couple of vidoes are).

Once again, I can’t thank you enough for your encouraging comments, FB messages, and e-mails. I am continually amazed to hear how my posts of Nora’s story¬†have inspired and affected your lives for the better. It is definitely a mutual feeding ground. You inspire me and encourage me more than you could ever possibly realize. Even if you don’t comment, the stats of the visitors to this blog speak volumes. There are the moments where I step back and think to myself, “REALLY? Me? Something I wrote is having a profound impact in all these people’s lives??” I don’t and can’t take credit for any of it except the fear and worry — that would be mine, despite my efforts to be rid of it. However, by choosing to cling to my faith and turning¬†to God during this trying¬†time I believe God is working through me in what I write with the talent He gave me. I just marvel and question as to why God would have chosen ME of all people to engage in this journey. I never imagined myself as some kind of spiritual leader, or holy dignitary, and certainly not saying that I am! I love to partake in Bible studies, but I would’t consider myself an expert in scripture. I still have to page through the whole Bible twice trying to find¬†a particular¬†book¬†before eventually¬†resorting to the Table of Contents.

I know there are probably people from my high school or college days wondering, “What in the heck??” The person writing these posts probably isn’t the Aleisa they remember. I most assuredly don’t suddenly have it “all together” now, and I hope that I don’t come across that way. I still yell at people doing 45 in the left lane, I still lose my temper with my kids and the phone and cable companies, my sense of humor is often times inappropriate, I don’t always put my grocery cart back in the cart corralle, and I rip the tags off of mattresses and pillows. I also still rock out to the Beastie Boys from time to time¬†as well (but I don’t think God so much minds that?).¬†So why would God choose me? I felt unworthy, unqualified, lacking in strength and ability. Upon closer examination, however, that seems to be the common theme throughout many of the Bible stories. Many of the people that God singled out and used to fulfill His purpose were not who we would expect Him to choose. These were no noble, hearty, natural born leaders that God chose.

Gideon.¬† His response to God was, “How can I save Israel? My clan is the weakest in Manaseh, and I am the least in my family.”¬† His clan wasn’t ONE OF the weakest, it was THE weakest!

Moses. He answered, “Who am I that I should go to Pharaoh and bring the Israelites out of Egypt? … What if they don’t listen to me or believe me? … I am not an eloquent speaker, I am slow of speech and tongue!¬†… Please send someone else to do it.”

David. Again, he was the youngest, least important member of his family. He was so unimportant that he wasn’t even presented when Samuel came in search of God’s chosen king over Israel. David’s father Jesse presented only his strongest most robust sons – obvious leaders. Further evidence that God’s idea of a person of strength is NOT ours. Nor was David of exemplary moral character as time went on. He committed adultery and murder!! Why would God have bothered with a man like this? I believe it is because when all was said and done, David had a repentant heart. Despite his human inequities, he was a man of God.

In searching through the Bible this morning to find exact reference to these stories I was only casually familiar with, I was humbled. I am in no way putting myself in the same category as these Biblical greats, but I am putting myself in the same category of being on the receiving end of God’s grace and mercy. Unqualified, ill-prepared, self-absorbed, sarcastic, and even a bit of a recluse, God seems to have seen something else in me that I never could have imagined. I am proof that you do NOT have to be in perfect spiritual condition to be accepted, chosen and loved by a mighty, mighty God.

But being a Christ follower must not be any fun, perhaps you imagine (as I once did). What fun is it if you have to be good, nice and perfect all the time? That life style is reserved for people like judgmental Church Lady on Saturday Night Live…

I didn’t want to be like that!! (eyes rolling)!! That is what I thought for much of my life. But… As it turns out, that’s not at all the case. No, I don’t partake in many of the activities I once thought were the funnest thing(s) in the world anymore, but I assure it’s not out of guilt or obligation. I’m just not interested in them anymore. I look at it like this: there was once a time in my life that I could have spent the entire morning and afternoon playing with Barbie dolls. As I grew older I became interested in other things. That wasn’t really entertaining anymore. There’s never been a time within the past 30 years that I longed to go back to that life of playing Barbies. There are way better things to occupy my time with! I don’t have to be perfect. I don’t have to be pre-qualified. I don’t have to be strong. I don’t have to be the epitome of morality. All I have to do is say, “Yes, Lord!” With faith and hope I accept and receive God’s grace and mercy. My family’s circumstances are certainly not easy right now by any stretch of the imagination, but they are bearable with God either walking beside us or carrying us when we can’t walk on our own.

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Those who hope in the Lord
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.
(Isaiah 40:31 NIV)

For it is by grace you have been saved, through faith‚ÄĒand this is not from yourselves, it is the gift of God‚ÄĒ not by works, so that no one can boast. For we are God’s handiwork, created in Christ Jesus to do good works, which God prepared in advance for us to do.
(Ephesians 2:8-10 NIV)

Nora – 87 Days Old

Stay tuned for a second post for Day 87. In the mean time, here are some sweet pictures from today and even a couple if videos by special request ūüėČ

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Mmmmmilkiesssssssss....

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I discovered my mobile today. It was so interesting I could hardly take my eyes off of it!!

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Be strong and take heart, all you who hope in the Lord.
(Psalm 31:24)