It’s been a rough day for us which is evidenced by the fact that we’re still here in the hospital. We did have a nice afternoon with a sweet visit from Sophie. I can’t begin to explain what a neat thing it is to see these two precious lives right before my very eyes. These two lives, that by the very grace of God I said YES to, despite their possible “inconveniences” of being “unplanned” or “imperfect”. These two individuals were both very planned and very perfect!!

A few hours later the cardiac team came to discuss Nora’s echo and EKG results. Basically, she has small ASDs and a medium sized VSD, neither of which would be causing her blue spells, nor do they require any immediate intervention if we were to decide to take that route. Our plan was to head home this evening with oxygen to have on hand should another episode arise. However, when we removed the oxygen it became quickly apparent that her little body couldn’t tolerate being without it. This came as quite a blow for me. She’d been doing so well, but turns out we’ve just traded one tube for another. I wondered out loud if we are simply just prolonging the inevitable for our own selfish reasons. I felt myself dangling from the thin wire I’ve precariously been balancing on for so long.  In Jesus’s own words I internally screamed,” MY GOD, MY GOD, WHY HAVE YOU FORSAKEN ME?” Just as I was about to “let go” the door to our room slowly opened and in walked a woman. I sensed immediately that she was overcome with emotion, but also wore a glowing smile. She proceeded to tell us how she has been following our blog for several weeks now and just had to come in and meet us. As she embraced me, my tears continued to flow, but for a very different reason. She reminded me of my great faith, how God has NOT let us down thus far, and of the multitude of lives this tiny, feeble little baby is touching. She had just resuscitated my faith in that moment and I began to breathe again.

I truly believe that God sent Linda to me right at that exact moment to give me that big hug and that clear as day message that He has NOT forsaken me. He is very much present and is busy at work here. It was too perfectly timed to be regarded as any kind of coincidence.

Here’s a sweet picture from this evening:

We are still here in the hospital because it was too late in the day to get all of the supplies we need to go home with (oxygen tanks, etc.) – Not necessarily for health reasons.  I’ll take that, as it could be worse!

Be strong and courageous. Do not be afraid or terrified because of them, for the Lord  your God goes with you; he will never leave you nor forsake you. (Deuteronomy 31:6 NIV)

I’d written a post yesterday with an excerpt from a devotional I’d been given. It was followed up with a great report of Nora’s wonderful day. Just as I had finished up, Nora had a blue episode – the worst one yet. Paramedics were called and administered oxygen, then left after Nora got her color back. We later decided to take her to Children’s Hospital for observation until we get her echo done – here we still are. Nora is holding steady without anymore episodes. She’s on oxygen and hooked up to a million monitoring wires, but fortunately we’re still able to hold her and love on her.

DNR seemed to be the best plan of action while I was still pregnant and everything was still theoretical… But now that we have her and know her – I can’t imagine saying goodbye to her. The mere thought just about rips my heart out of my chest. I still trust my God and Savior, but I sure do hate this situation right now.

While Nora’s great report of yesterday no longer pertains, the exerpt from the Streams in the Desert devotional is still very relevant. It was from April 17, Nora’s birthday:

The hand of the Lord has done this. (Job 12:9)

A number of years ago the most magnificent diamond in the history of the world was found in an African mine. It was then presented to the King of England to embellish his crown of state. The king sent it to Amsterdam to be cut by an expert stone cutter. Can you imagine what he did with it?

He took this gem of priceless value and cut a notch in it. Then he struck it hard one time with his hammer, and the  magestic jewel fell into his hand, broken in two. What recklessness! What wastefulness! What criminal carelessness!

Actually, that is not the case at all. For you see, that one blow with the hammer had been studied and planned for days, and even weeks. Drawings and models had been made of the gem. Its quality, defects, and possible lines along which it would split had all been studied to the smallest detail. And the man to whom it was entrusted was one of the most skilled stonecutters in the world.

Now do you believe that blow was a mistake? No, it was the capstone and the culmination of the stonecutter’s skill. When he struck that blow, he did the one thing that would bring that gem to its most perfect shape, radiance, and jeweled splendor. The blow that seemed to be the ruin of the magestic precious stone was actually its perfect redemption, for from the halves were fashioned two magnificent gems. Only the skilled eye of the expert stonecutter could have seen the beauty of two diamonds hidden in the rough, uncut stone as it came from the mine.

Sometimes, in the same way, God lets a stinging blow fall on your life. You bleed, feeling the pain, and your soul cries out in agony. At first you think the blow was an appalling mistake. But it is not, for you are the most precious jewel in the world to God. And He is the most skilled stonecutter in the universe.

Someday you are to be a jewel adorning the crown of the King. As you lie in His hands now, He knows just how to deal with you. Not one blow will be permitted to fall on your apprehensive soul except what the love of God allows. And you may be assured that from the depths of the experience, you will see untold blessings, and spiritual enrichment that you have never before imagined.  J.H.M.

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Nora is getting an echo done right now. Please pray.

But the fruit of the Spirit is love, joy, peace, forbearance, kindness, goodness, faithfulness, gentleness and self-control. Against such things there is no law. (Galatians 5:22-23 NIV)

The sleep deprivation has officially caught up with me. And of course that coincides with my sweet little miss’s sudden inclination for evening fuss interludes. I’m up for second helpings of “Fruit (of the Spirit) Salad”!

William and I had an awesome morning. Nora’s 10 am pediatrician appointment went great! Nora gained half of an ounce and is striding right along. “All things considered, we could not ask for Nora to be doing any better than she is,” Dr. Bolling stated. Were I physically able, I would have done cartwheels out of there. I was so happy to hear that. Also, the heart murmur that was detected Monday could not be heard at this appointment.  (!!!) We do have the echocardiogram scheduled for Monday morning. We’re all anxious to see what is really going on in that tiny little chest!

As we were leaving the appointment we received an awesome, unexpected blessing. I had already climbed into the backseat of the car with Nora. William was about to get in when a woman parked next to us rolled down her window. “Excuse me,” she said, “I just wanted to let you know that we’ve been praying for you!” She had never met us, only recognized us from the blog, yet boldly decided to speak out. By doing so she completely made our day! We had permanent smiles etched on our faces at yet another example of just how many lives little Nora has touched. Thank you, Jennifer for your courage in saying something to us and for praying for us! That was awesome!

Here are a couple of random, but very sweet pictures from today:

Thanks for the advice on Nora’s clogged tear ducts! The breastmilk seemed to do a great job at keeping the crusties away! We did get a prescription for some eye medicine too. Hopefully it will be minimal tomorrow — or gone!!

I started a group on Facebook called “Praying for Nora Rose Yusko”. If you’re not already a part of it, check it out! 🙂

The little miss is 9 days old and doing wonderful but for her poor clogged tear ducts. Her little eyes look pathetic today. Hopefully that will clear up soon!

Nora spent the day cuddling, sleeping and eating. She also went on her very first walk up to the mailbox.

Her big sister LOVES her!

I just have time for a quick update this evening. Nora is a little fussier than normal. We’re so used to her being quiet and content. She’s starting to act like a “typical” fussy baby, which is good!!! {Never thought I’d say THAT!!}

Again, I can’t thank you enough for all of your prayers and your amazing, beautiful comments. I wish I could respond to each and every one. William and I are touched and often moved to tears as we read them. Thank you!

When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. (Isaiah 43:2 NIV)

I try to think back to an occasion or time in my life that it was of benefit for me to have worried or to have been fearful of the future. I can’t come up with anything. Of course it is our human nature, primal instinct, maybe even a survival mechanism? I suppose it is appropriate to be “worried” about a tornado during a tornado warning, or sharks in shark infested waters. It’s when we mull over things in our minds, imagining and fretting about all of the “what ifs” and worse case scenarios as they relate to instances and situations in our lives and the lives of our loved ones. I can only describe that type of worry as self-induced misery. When we are so used to that way of thinking it is almost impossible to let go of that worry. By letting go of it, we somehow feel out of control. But are we really in control any way?

This morning as I walked through my bedroom with this sweetest of baby girls in my arms, I looked down at her. We were standing in the same spot where I had fallen to the floor 3 months ago, screaming in sheer angst over the news I had just received… “incompatible with life” echoing in my head. If only I could have had a glimpse 107 days into the future. All of the fear, anger, worry in that moment would have been alleviated to see this sweet girl. But life doesn’t work like that. We’re only able to live in the present moment. In the present moment we have the choice of self-induced misery or we can let God simply be in control. In the situation we were suddenly thrust into, I feel like I didn’t really have a choice. There was JUST NO OTHER WAY but to give it to God. It was too incredibly tormenting to handle something like this on our own. If God can handle the big things like this, why should it ever cross my mind that he couldn’t handle the little things?

Do not be anxious about anything, but in every situation, 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. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things. (Philippians 4:6-8 NIV)

By taking that verse into practice, I assure you that life can be lived so much easier. I am living, breathing proof. Not to say or imply I just flipped some spiritual switch and everything was “all good”. It is with daily, sometimes minute by minute reminding that I am able to implement this scripture into my life.

Here is something true, noble, right, pure, lovely, admirable, excellent and praiseworthy to think about:

Nora had another great day today. Thank you for your continued prayers. They mean everything!

It’s Nora’s ONE WEEK birthday today!! She is such a part of our family, such a treasured little being. She is celebrating right now by sleeping on my chest all curled up in a little ball. We love the rice crispie treats and brownies that were made in her honor today!

Today we went to Nora’s first pediatrician appointment. Ordinarily I am not crazy about the medical visits. I’m much more at ease being in the comfort of our home where we can focus on living in the present moment instead of worrying about what the future holds. Of course I want to do anything and everything I can to ensure Nora’s well-being, but while everything is going well at home, I’d just assume stay there basking in the sweetness.

Here is Nora on her way out the door this morning:

Let me first start off by saying that our first experience with a pediatrician just after Nora was born while we were still in the hospital did not go over well at all. Perhaps it was his inexperience with trisomy 18, fear of the unknown? I’m not sure what the problem was, but I am sure that no parent, ourselves included, appreciate being offered condolences on their living, breathing child that is very much alive! I won’t bother you with the specifics, other than to say the short visit was very upsetting.

The next day our sweet nurse Kate arranged for another pediatrician to pay us a visit. Dr. Reuter completely made up for the former pediatrician’s perceived lack of compassion. Here was a man who lovingly took my newborn daughter into his grand, gentle hands, held her close and softly stroked her tiny head full of dark hair. To this man, Nora was a baby, not a diagnosis. Instead of taking Nora into the adjoining room to examine her, he asked if he could examine her right there on the bed, that way William and I  could both be present. My heart swelled with emotion and gratitude as Dr. Reuter proceeded to get down on his knees to get a better look at this sweetest of babies. He understood our concerns and took the time to answer our questions. He wanted to know all about our journey to that point with genuine interest and compassion. The comfort and love that emanated from this man was just what we needed. He was a true Godsend. As he left our room, we both got emotional, thanking God for sending Dr. Reuter right when we needed him.

The pediatrician we saw today, Dr. Bolling came highly recommended by Dr. Reuter, and rightfully so! He, too was another gentle, compassionate person and we are grateful to have Nora under his expert care. My reluctance on being there was quickly dashed after just a few minutes of conversation with Dr. Bolling. Nora’s PKU tests all came back normal, her weight is consistent with her hospital release weight. Four pounds, ten ounces!! And her heart is doing its job for the time being. We are, however, scheduling to have an echocardiogram done within the next few weeks to see exactly what her heart defect is. Right now Tetralogy of Fallot is suspected. No bad news, no pressure into making any immediate decisions, and hopefully no germs picked up. It was a very good visit!

Here are a couple more pictures of our little ONE WEEK OLD from today:

He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. (2 Corinthians 1:4 NLT)

Sorry for taking so long to update!

It is a beautiful sunny day from inside our cozy house, although it looks a little chilly and windy out there! Little Miss Nora is tucked away on me, sound asleep. Her bare little bird legs are toasty warm all curled up on my “popped balloon” belly skin. She makes contented little baby sounds from time to time. I love her so much it hurts!

Here is today’s dose of cuteness – lots of fun in the sun today:

Yesterday and so far today everything has been going really well. A couple of times yesterday and once today Nora took to breastfeeding!!!! I was crying happy tears to be given that opportunity. I had pretty much given up any hope of that when her feeding tube was put in. God never ceases to amaze me through this fragile, but mighty little infant. The only difficulty with breastfeeding is that we’re not sure exactly how much she’s getting and it seems to really wear her out. It sure is precious though!!

A Bible verse was brought to my attention again this afternoon.  Jeremiah 1:5.  It is the same Bible verse that we chose for Nora’s gender reveal cake. We left off the last part of the verse because it didn’t really seem to apply at the time. I read this verse again and couldn’t even read it out loud without getting choked up over the last part:

“I knew you before I formed you in your mother’s womb. Before you were born I set you apart and appointed you as my prophet to the nations.” (Jeremiah 1:5 NLT)

Over these past few days I have received countless emails, blog comments, and FB messages, many from complete strangers all over the world: Japan, United Kingdom, Australia, Philippines, maybe more? (If so, I’d love to hear from you!). I am floored to see 762 Facebook shares on my blog the other day, and an average of 20,000 hits each day on the blog since the day Nora was born! That is just crazy awesome, people!!!!

The common theme among most of these beautiful comments is a renewed faith in God, a new perspective on God, on life and on what REALLY matters in it. There are people praying right now for Nora who “don’t normally pray, but…”. The notes about all of the children who are praying, it brings such tears to my eyes!! All of these sentiments hold true for me too. I have learned SO MUCH about God and his mysterious ways along this journey. If ever I come across as having it all together, and all spiritually figured out, I can ASSURE you that is not at all the case. I learn something new everyday, and I have to share it when I do!!

Through this blog, Nora has been appointed as a prophet to the nations, and to her Mommy and Daddy! She has touched so very many lives just simply by being born. I realized very early on that there was just no easy way “out of this”. Yes, I was given other options that may have seemed like an “easy out” – but was it really?  Look what we, ALL OF US would be missing out on!! I must be the luckiest person in the world to get to cuddle day and night with this little miracle, a tiny prophet to the nations.  Thank you, God!! Thank you, Nora!! And thank you to all of you who have shared with me how Nora has affected your life. I am forever humbled and grateful.

“Not compatible with life” … More like “Compatible with many, thousands of lives!”

P.S. Check out Melanie’s blog 🙂

I write this from my phone (as I do just about all of my posts). I have a very tiny warm, fuzzy little person sleeping on my chest, snuggled in blankets. This? This is heaven.

I think I’ve done very well so far with keeping my worries of the future at bay. Logically I know that worrying serves no purpose but to torture us. As I lay here listening to the soft repetition of tiny baby breaths, I thank and praise God for moments like these.

Here are some pictures from earlier this morning:

Yesterday was a really good day. Nora finished off a couple of bottles on her own, and she was awake and alert for an extended period of time. On days like that it’s a little easier to keep the anxiety away. However, yesterday evening, that was no longer the case. Nora had her first “blue episode” where she started turning blue from lack of oxygen. Not sure if it was heart or breathing related. It happened twice, and each time was excruciatingly terrifying. To think that this little girl could just pick up and leave us at any given moment is almost unbearable. Given the statistics, it is likely that will happen. We just don’t know when that will be. So here we are engaged in a whole new chapter of uncertainty. But as in the previous chapter, I am putting my hope and trust in God.

Please continue to pray for this sweet precious bundle of love tucked away here on my chest, but also pray for our strength. That we will have peace with whatever it is that God has planned for us, when ever that might be.

Trust in the Lord  with all your heart
and lean not on your own understanding. (Proverbs 3:5 NIV)