"Are you talking to me?"

Yesterday was bath day again and while there are quite a few photos of ZAC, this one is my hands-down favorite from the set.

With the frown and 'the look', you can almost hear her saying, in a De Niro-type voice mind you, "What? Are you talking to me? You talking to me? Awww, never mind. Fagetaboutit!"

Too Soon

The plan had been to remove the intubation tube on Friday and put ZAC on the CPAP. With the dawning of Wednesday, it looked like this timeline could be advanced and that perhaps she could be free of this restriction today. She had been doing well and her CO2 levels were such as to allow the transition...

Well, according to Zoe, this was a bit too soon. After attempting the change, she decided that the 'old way' was just fine and she wasn't interesting in any more changes just now, thus back to the intubation tube.

On the feeding front, Zoe continues to be fed calorie-reinforced milk, but now caffeine is added to the food (since the IV is removed). Interesting... I have heard of milk in one's coffee but does that mean she has coffee in her milk? Ah, the trials of newborns!

Well, let's just pray for a good evening for little ZAC.

ZAC's GP

Safe and Warm

After the scheduled 'Kangaroo Hold of last evening (it was Phil's turn), Kim provided me with a brief update on Zoe. Not a whole lot of additional information beyond what was already reported but there were several new photos of ZAC with her daddy. Kim also wanted me to point out that I was wrong about Zoe's feedings... well, there goes my Pulitzer's!

In any event, Kim writes,

"Dad,

They are going to continue to monitor her head size and get another ultra sound next week Tuesday. No changes as of yet, which is good. But no decrease either...

Nothing else is different from what I mentioned before, though FYI she is getting fed every three hours, not two!

Thanks,

Kimberly"

Trust

"I wash my hands in innocence, and go about your altar, O LORD, proclaiming aloud your praise and telling of all your wonderful deeds." - Psalm 26: 6-7

On her way home from work, Kim provided the ZAC update for today.

Zoe continues to do well, with her feedings increased to 11 cc/2 hrs and all IV lines, antibiotic lines and other such stuff now officially removed. The only ‘foreign tubs’ that remain are her intubation tube; which is to be removed by Friday and replaced by her CPAP, and her feeding tube which will, I am sad to say, remain in place for at least 1 more month. It seems that Zoe can either suck, breath or swallow but has yet to master the unique differences between each task (Editorial note: I have the exact same problem with chewing gum and walking… must run in the family). As for her feedings, the milk now is ‘calorie-improved’ so as to allow her to bulk up, with the goal of a ½ an ounce per day of weight gain. At current weight 1 lb, 9 oz. and 12 inches she has a ways to go.

Her breathing continues to be good and the last vestiges of the infection have now passed. The heart issue that had plagued ZAC continues to remain ‘gone’ and, with allowances for her need to grow, the only real ‘open issue’ is the blood clot. The additional scan was performed today with the results being that the clot was, “No bigger…” of course that is not the same as “The clot is gone …” thus we continue to wait, pray and trust in Him.

ZAC’s GP

Can a Monday be Good?

In the 'world of weekdays', Monday has never... repeat never, been one of my favorite days. With the clot problem... as well as the latest challenge for Zoe (her infection) hanging over Kim, Phil, and the rest of us, Monday looked all the more like a day to be avoided, circumvented and ignored.

When I called Kim this morning for an update, the best news that I was able to glean was that she had restarted her life to some extent and had gone back to work... an abbreviated schedule and part-time, mind you. She had gone to see Zoe this morning, without any real or measurable change in her condition. Beyond this, no new information was forthcoming.

Around 2 PM, Phil called me and at last I was able to detest this particular Monday less, based solely on his report, mind you.

As Phil put it…

“Zoe was feisty and wanted to lie on her stomach. When the staff would roll her on her side or her back, ZAC would summon all of her strength and would try to flip herself over.”

“As for the infection, the antibiotics [editorial comment - and prayer] did the trick and the ill effects of the virus have lessened. It was hoped that Zoe would be completely removed from all antibiotic treatments by the end of the day.”

“Her feedings were recommenced, at 10cc/2 hours with the goal still being 13cc/2 hours… Full feeding maybe by Friday? Also by Friday it was hoped that ZAC would have the intubation tube removed in lieu of a CPAP.”

“Zoe’s breathing, while at times raspy, remains satisfactory with her O2 level going from 25% to room air.”

“Finally, as for the brain clot, an additional sonogram is scheduled for Tuesday with the results to be evaluated both at WMH as well as another children’s hospital. Per the latest ‘specialist’, a wait-and-see approach (unless something life threatening and dramatically requiring action) is the prescribed course of action, since it is felt that any preventative or corrective surgical actions could/might cause additional harm.”

“As for any long-range repercussions from this issue…. No one knows and no one can say.”

Well, as far as Mondays go, I guess that this one hasn’t been so very awful after all. Thank you all, for your prayers and petitions… WMH can ascribe the improvement to antibiotics but I’ll ascribe it to a higher level.

And thank you Lord, for listening to your people’s pleas.
Now about this clot on her brain…

A Somber Post

All,

I just spoke with the hospital.

Zoe had not been breathing well and they are doing tests to find out why... but they suspect an infection of some kind. We won't know until tomorrow for sure.

They did start antibiotics just in case.


Kimberly

And Kim writes...

Hello all,

Apart from the whole clot thing, yesterday went really well for Zoe. She has been 'pooping' on her own on a regular basis (the things we take enjoyment in!), her occupational therapist says she is handling her exercises well, and she has been doing well O2 wise - 21%-27%!

She also had another bath and she is now up to 10CCs of food every three hours. Only 3 more CCs and she will be on full feeds. She is also now off of TPN (that's the the vitamin filled IV) and only is getting lipids and glucose via IV. Once she hits the 13 cc-per-day mark they will also remove the line from her skin, thus decreasing her chances for an infection.

Alas, she had another transfusion yesterday... but it went well and she now has a new line in her foot for both transfusions and her caffeine. When we went to visit her last evening, she was pretty tired out from the days events so she slept on Phil's chest for a good hour and a half.

Sunday should be a fairly quiet day, with the next ultrasound for her brain scheduled for Tuesday. They are also measuring her head every night for any swelling and tracking any consistent and drastic increases in a short amount of time.

We are still praying that the clot either make its way along or slowly disintegrates, but time will tell what will happen.

Thanks for the prayers and words of encouragement(and please have them continue).

Kimberly

Wondering what the week will bring...

... but until Monday comes, sleep well little girl. Rest yourself in His hands.

- ZAC's GP

3 Week Milestone

Three weeks have now passed since ZAC entered our world and these three weeks have been fraught with trials, victories, hurdles, joys and disappointments. Questions about Zoe's health, her well-being and her future all end in a big, fat question mark... and this 'punctuation' takes a toll on Kim and Phil, a toll on the extended family and friends and most of all, on little Zoe. It seems that there is no certainty here and that everything is in a constant state of flux.

Well, that is not entirely true, is it? Based on our mere mortal standards it may indeed seem that the chaotic events of these past twenty-one days have occurred without rhyme or reason, but if we were to simply accept that then we would be missing an opportunity to glimpse into the Divine.

That these things have happened is fact and that they happened under the permission and with the intentional consent of God is also a fact.

I guess we could bemoan these facts... or we could look deeper:

Why did He have this to happen?
What is He trying to teach us?
How will He be glorified in this?

These are better questions to ask, and while this doesn't make the anxiety go away, it does make it bearable. Bearable by making all those question marks a little less bold.


... And until we have answers to these new questions, we will all continue to pray.

- ZAC's GP

A Potential Serious Problem

After being unable to get in touch with Kim today, I started to get a 'bad feeling'. This bad feeling was confirmed at around 1 PM today when Phil called to tell us that the latest sonogram of Zoe's head shows that, at the location of the previous bleeding, there was now a spot/bruise/clot that could/may/might cause no/some/major issues in the future. With concrete facts like that it is easy to see why parents in similar circumstances go 'a little nuts'.
All that was certain was that a 'spot' on the brain is never a good thing and that it is a potentially serious setback for Zoe.

The WMH NICU staff were somber today, and while they tried to put the best 'face' on things, there was a marked decrease in their enthusiasm level. They did try to preface everything with factoids like; ZAC is eating well, her digestive track is back up to par, she is breathing mostly on her own... Yet this new crisis hangs in the air like a pallor of doom. The hospital's prescribed course of action (under Phil & Kim's consultation) is to do nothing and wait until next week and retest via the ultrasound machine.

Well, that might be fine for WMH but it is most assuredly not enough for me. Over the past 20 days I have been living in a state of awe and have been undeservedly privileged to witness the sheer and magnificent power of God and how He condescends to the simple, heartfelt and earnest prayers of his people, and it is to this end that I again call forth the 'team' that have assembled to watch His hand in action and I again plead for prayers for Zoe's brain and the dissolution of this clot.

- ZAC's GP

For the eyes of the Lord are on the righteous and his ears are attentive to their prayer, but the face of the Lord is against those who do evil." - 1 Peter 3:12

ZAC Got A Bath

There isn't a lot of things for ZAC to do in the NICU that are designed to keep her entertained so when your very first 'Bath Time' arrives, life is pretty good, and when mommy gets to do the bathing, well, so much the better, and when after your bath you get to sport a spiffy new outfit to boot... well, life is grand indeed! Don't you just love that 'New Baby' smell?

As for the Zoe update, things continue to progress in a positive direction. The heart issue seems to be 'fixed', with the understanding that this could all change and her little world could come crashing down again... but for now there are no circulatory issues. As an added benefit, with Zoe's improved heart functions she has become less sensitive to sounds and this has allowed the removal of those stylish headphones... of course she remains in a 'sound restricted area' of the NICU. She has also become less fussy as well as less sensitive to touch, which allows Kim and Phil more physical contact without a decrease in her 'stats'.

ZAC's respiratory functions continue to be good, and while she remains intubated, her O2 levels float from 25% to 'room air', with the hope that in a very short time she can come off the 'tube' and just have 'nose plugs'. For now, all is well and the WMH staff remain optimistic.

The two major areas of focus/emphasis for the rest of the week are:

Occupational Therapy - Much of the 'in-womb' exercise that Zoe would be getting is now missing since she is no longer resides at her former address. In order to maintain a healthy baby, this necessity has to be replaced by the machinations of therapists. Put another way, Zoe now has a personal trainer. "Feel the burn, baby... feel the burn!"

Feedings - Now that Zoe can resume normal feedings, the goal is to get her to a 2cc feeding every 2 to 3 hours for a total of 11 feedings per day. This process started today, and it is hoped (and prayed for) that her digestive system is up to the task and this will usher in some additional weight gain.

As for Mommy & Dad, they continue to try to incorporate parenting with their work and life. Kim reports that she will be returning to the working roles in a few days, albeit in a limited capacity and Phil continues to be an active 'juggler' with all of his new found responsibilities. Twice daily visits are still the norm and Kim and Phil get those "Kangaroo Holds' in when they are offered, with Phil 'doing the deed' last night and Kim scheduled for tonight.

ZAC's GP

No More Pictures!

My daily routine was made a little (okay, a lot) better today with Kim's report. Life is pretty darn good today, for us, for Kim & Phil and most of all... it was GREAT for ZAC! Don't take my word for it, read on and see if you don't agree that His blessings rained down on all of us today!


All,

Great news! The PDA is closed!
The echo-cardiogram showed that the indomethacin worked.
She was also measured yesterday and she grew.... 12 inches 1 lb and 8 oz.
Since the need for surgery has passed, her feedings have started up again.

As for her breathing, she has been on room air this afternoon and tonight I am heading out to kangaroo with her.

Praying that she continues to do well.

Kimberly

Sunday is a Day of Rest...

... And the Casmer's can appreciate the need for this rest considering the mercurial week that ZAC (and Phil & Kim) have had. It was good, then poor, then shaky and then miraculously 'just fine'.

You know I am getting too old for these roller coaster rides, but come to think of it, Zoe is too young to be doing roller coasters too. Well, at this moment in time, all is still good, in fact this is the 2nd consecutive day of 'Up'. We all hope and pray that this trend continues and that a gentle, calm and restful week is in ZAC's future. After all, a calm week will allow her to better model her newest line of clothing... that 'skin and diaper-look' was so Last Week!

Well, enough from me... On to the update:

All,

Just wanted to let you know that Zoe is staying pretty stable.
Her O2 levels continue to be between 24-29 and she seems to be a bit less sensitive to sound. (This is a praise, since loud sounds caused her stats to drop.)

The murmur can still be heard, however it seems smaller. We will know more after the echo-cardiogram tomorrow. (Prayer for good test results please!)

This afternoon we went to visit her and she was pretty active with her stretching and wiggles.

She is having bouts of bradycardia; her heart slows down below 90 bpm. She is able to jump back to her 160 bpm on her own; however this has to be monitored just in case. (Here again, a few prayers avails much!) Despite this, Phil is going to hold Zoe for some quality kangaroo time tonight.

Till tomorrow's results,

Kimberly

No News is Good News

I wasn't able to call Kim tonight and get an update. They did post a new couple of pics, so here is one of them. Kim and Phil still have company so I guess they too have had a busy week.

Let's just assume that 'No News is Good News' and wish little Zoe the very best for the weekend.

Good Night Sweetie.

- ZAC's GP

2 Weeks...

Fourteen days...

Three Hundred-Thirty-Six hours...

Twenty Thousand-One-Hundred-Sixty minutes...

One Million Two Hundred-Nine Thousand-Six-Hundred seconds... God is indeed good!

It was looking like a shaky end to the week and had all the makings of a less than memorable 2nd Week, but then it was all okay again. In the span of hours all was well again. Some would say it was coincidence, some would call it Divine intervention. I would tend to believe the latter more than the former. May the 3rd week be just a bit less 'exciting'.

As for tonight's report, Kim writes:

Zoe is having a great day!

The nurses stated that it seems like the murmur sounds smaller, but we have to wait till Monday to be for sure (echo-cardiogram).

Her breathing has been great today and Phil will be able to kangaroo tonight.
They hope with the Kangaroo Holds we get to keep doing her recovery time, in the event of surgery, will be decreased.

One day at a time.

Kimberly

... And Again I Say Amen!

Therefore confess your sins to each other and pray for each other so that you may be healed. The prayer of a righteous man is powerful and effective.

- James 5:16

Need proof? Well you need to go no further than a few inches below. Read on and be amazed at the mighty hand of God.

Dad-

Got a call from the NICU a little after 7 PM, Zoe was doing great, her O2 level was down to 23% and they wanted to know if I could do a Kangaroo Hold tonight, since she was stable.

I got there and changed a very 'poopy' diaper and again she peed after I pulled the dirty one out from under her. She has great timing, right?

Held Zoe for about an hour and a half... She slept soundly on my chest and only got fussy when somehow she worked the tape securing her tube off her face. Nothing beats the feeling of hiccups on your chest from your baby.

Praying that this continues, the medicine does its job, and we can finish Week Two strong.

Thanks for the prayers from everyone,

Kimberly

Another Rough Day...

As far as days go, I guess that today would have to be the worst one in the very short time that Zoe has been with us. As always, prayers for her well being, her health, her recovery and her growth are asked for...

and as always, the Casmers rest secure in the knowledge that these prayers are already underway.

I am at a loss to understand the will and wisdom of God in times like this. The best that I can hope for is to watch in anxious anticipation… still, today weighs heavy on my soul.

As Kim writes; “Today continues to be a rough day for Zoe. After a visit from Grandma and Grandpa Casmer, Zoe decided that her stats should drop considerably. Nothing like watching your daughter change to the color purple before your very eyes. The capable nurses got Zoe back to where she should be and she recovered quickly after that.

Things like this have been going on all day now, just another part of the roller coaster that is Zoe's life.

As we had feared, the ibuprofen didn’t do the trick and the staff began a new medication, Indomethacin, in the hopes that it will cause the heart duct to close. When this heart problem is over and the duct is closed, the hope is that these chaotic episodes will stop…

The breathing tube can come out…

Feedings to begin again…

And she can grow.

Two more rounds of this new drug are scheduled for tomorrow and Saturday. Then on Monday we will know if we will need surgery to correct the duct.

Right now all of our prayers are centered on Zoe becoming more stable so these dramatic drops and climbs in her stats become less frequent and that the medication does what it is supposed to do, rather than just extend the PDA till next week. All of us would like avoid surgery considering how fragile she is right now. We just need her to get to that point so everything else can happen.

Requesting prayers for Zoe,

Kimberly"

Psalm 3:5

I lie down and sleep; I wake again, because the LORD sustains me.

- Psalm 3:5

A Second Down Day

As has become our normal routine, I gave Kim a call on my way home from work for a ZAC update. As we began our conversation all sounded bright and hopeful. Kim did report that the last installment of the ibuprofen had been give and that, as the doctors told her, if this doesn’t do the ‘trick’ with Zoe’s heart, they will be trying another medication regimen. This planned course of action will require ZAC to go without a feeding for 3 days. They also report that if this new medication doesn’t work then the surgical option would have to be considered… and that surgery could be as soon as a few weeks from now.

Still, Kim kept up a ‘stiff upper lip and soldiered on’. She then reported that despite the new locale in the NICU, Zoe continues to be ‘moody’ and ‘fussy’ and each noise, turn and prod has resulted in a ‘stat’ decrease. Well, Zoe does recover quickly but a drop is still a drop. And still Kim maintained composure…

… And then the phone rang. The NICU was calling to tell Kim that the scheduled Kangaroo Hold would have to be cancelled tonight. ZAC was just too finicky tonight, and with that the floodgates of anger, doubt, anxiety and tears were unleashed. The ‘strong’ Kim had had enough… now it was time for Kim to be just a disappointed mommy.

Yes, she will still go up to see Zoe tonight… in fact, if memory serves, they are getting Arizona visitors this evening, but the interaction tonight will be limited to just sitting. Tonight there will no touching, no reading, definitely no holding… just sitting and watching Zoe sleep, just sitting and worrying.

Worrying about the next bump, the next bounce, the next hurdle.

I am reminded of some wisdom that my dad shared with me years ago as he was trying to teach me to drive. I remember that as I sat behind the wheel of that big old Ford Fairlane and attempted to navigate down the road, my path was erratic. I would drift to the right, and then to the left, and then back to the right. It was so very hard to keep that ‘tank’ in the center of that tiny lane.

Then my dad asked me, “Where are you looking?”

I told him, “The road… right in front of the car. What do you think I am looking at?”

It was then that he told me the secret of going straight, “Look way off to the front… maybe 300 or 400 feet in front of the car.”, he said.

I did and like magic I centered into my lane as if a magnet were drawing me and I stayed there like I was shot from a rifle.

Dear Kim, as you sit next to Zoe tonight and as you watch her sleep, please try to remember this…

It’s a very long drive. Try to take the long view. Look way down the road, and when that view looks particularly scary, maybe a glimpse into the rearview mirror will help you make it the next mile.

Sleep well Zoe, sleep well Kim.

-ZAC’s GP

Daddy's Little Girl

To all who follow this daily ramble... but most of all to Kim and Zoe,

I am most assuredly not an expert on all of these new-fangled, modern medical developments and the early arrival of Zoe, I must admit, has placed me in the position of trusting solely in the Lord, cuz I sure as heck better not be trusting in myself!

Now don't get me wrong... I realize that this is a real good place to be and over the years trusting in myself has been a recipe for disaster or at least going down the wrong paths of life but today [well this morning at least], was different. Today, when I saw the photos that Kim took last night, I realized that I was looking at something that wasn't so strange... wasn't so foreign. Here was something that I could relate to for here was the reassuring picture of a father and daughter. Heck I have been here twice myself. I am an expert [of sorts] at this! This is something I can wrap my head around, this is something I can understand... and more to the point, I know exactly how Phil is feeling and what he is thinking.

You fathers out there know what I am talking about, right?

The feelings are this strange amalgamation of pride and fear, of immense joy and abject terror. She is so small... so fragile... so precious. You wonder if you are up to the task. Are you strong enough for her, are you brave enough? Will you be able to measure up in her eyes?

You want the very, very best for her but you also want to keep her all to your self...

... But you won't do that.

You know that you will watch her grow up, you will feel every bump and bruise, every heartbreak and every triumph that she feels (but you will never let on that you empathize, lest she think that you are somehow weak). You will watch her gain independence and feel elated that she is 'her own women' and at the same time dread that 'you are no longer needed'. In time, this misconception will pass... but the ache will remain, yet the ache is a 'good ache'. It's just a Dad thing.

It is a bittersweet tale when daddy and daughter first meet. Enjoy this time Phil, and may God bless you with the chance to live it over and over again. For me, God has blessed me twice with the chance and I wouldn't trade it for anything in the world.

... and Zoe, know that you are holding the heart of the man that is holding you and despite what he might say, his heart is just as fragile as you are.

- JL