Sunday Report

All,

Well wanted to let you know where things stood with Zoe.

Zoe's now up to 19CCs of food per feeding and she is steadily gaining weight. The new goal is 1 kilo (2.2 lbs)and then she should be [tentatively] ready to be taken off the ventilator and moved to the CPAP. The nurses also state that her fontanelle (Editor's note: Kim's big words forced me to look this one up. LINK: www.en.wikipedia.org/wiki/Fontanelle) seems to be decreasing in size, this bodes well but we will know for sure on Tuesday if the ventricles are decreasing. (Gee Kim, give us a break! LINK: http://en.wikipedia.org/wiki/Ventricular_system.)

We are definitely starting to see Zoe's personality more. When she gets hungry she beeps... when she is wet she beeps, and as the nurses come rushing to her bed to see what is wrong, they report she looks at them with her huge eyes demanding their full attention. She likes her head to be rubbed... but not her stomach. She causes a bit of trouble with her consistently pulling her feeding tube out and trying to pull off her ET holder off. (ET? Forget it.) She definitely has a mind of her own.

Today (Saturday) I was sick so I didn't get to see Zoe at all. Phil was on Daddy-duty so he gave her a bath and kangarooed this evening. He said that she did very well and even brought home a card Zoe "made" for me. (All together now, "Awwwwww.")

Praying that things continue to go well,

Kimberly

5 and 2

As we continue with our restful days, all wrapped up in the midst of the 4-day Thanksgiving weekend, Kim reports that all continues to progress well [concerning Zoe], and the Casmers are also pleased to report that ZAC has hit both the 5-week and the 2-pound mark at the same time? How awesome is that!

(It must have been all of those protein-power bars.)

There are no tests, procedures or events scheduled for the remainder of the week, except for the occasional bath (you work up quite a sweat doing all of that growing), and all ZAC has to do between now and Monday is eat, sleep, grow and be well. That's a pretty good life!

Have a restful weekend Zoe, have a peaceful weekend Kim and Phil, and bask in the blessings of our Lord.

ZAC's GP

A Most Excellent Report

It may not seem appropriate to make a big deal about a 1 month birthday but considering the up-hill battles that ZAC has had to engage in, every little victory is a 'victory indeed'.

With Thanksgiving just hours away, here is something that we can truly be thankful for. It's not turkey or traditions nor is it football, friends and family. Instead it is an honest, humble and sincere chorus of thanks offered up to God for this precious soul and the continued grace that He showers upon not just Zoe, but to all of us. For His gift of life, both temporal and eternal, we all offer up thanks.

On to a most excellent report:

All -

Here are where things stand after one month:

• 12 1/2 inches
• 1 lb and 13 oz.

They have decided to increase her feedings to 16 CCs per time and they are now adding protein with calories in order to beef her up. They don't want to just add fat but really boost the bone and muscle development.

They are also adjusting her vent settings in the hopes that they can remove the intubation tube by the end of the week (at the earliest), but before they will do this, they want to add more "meat' to her bones first, hence the supplemental feedings. They are also considering steroids for added lung development, but that would slow down her growth so they again want her to gain weight before they try to do this. More patience is needed. More opportunity to wait on His will.

As for the ultrasound... well the cranial ventricles are the same size and there has been no swelling. This is great. It seems that the clot may be getting smaller but time will tell. Patience and prayers will fill in this time. Until then, they continue to measure her head each night and will do the ultrasound again next week.

Zoe's month birthday was fun, we did a bath and took pics. We got a pic with Phil's ring to compare to one of the first pics. (down below) You can see how much she has grown.

Well one month down and many more to go!

Love,

Kimberly

It Was A Good Weekend

All,

Zoe is steadily gaining weight, an ounce a day, but they are going to start adding protein to her milk now for muscle and bone development.

Her ultrasound is still scheduled for Tuesday and there has been no unusual growth in her head size, which bodes well... But again we wait for the ultrasound.

The doctor doesn't want to remove the breathing tube untill she has a bit more weight, one kilo which is slightly over two pounds... So maybe by the end of the week. - Kimberly

4 Week Milestone

It has been 4 weeks since we started this roller coaster ride and while it is true that we had a shaky start, most of the issues that plagued ZAC have been addressed, corrected, mitigated or prayed out of existence. Pretty impressive when one considers who it has been that has been doing the praying... Of course it is far less impressive when you sit back and consider who it is that has been acting on these prayers. Well enough waxing philosophic, the point of this exercise is to provide updates and reports to the people who love and care about the Casmers, so on to the report!

Kim writes,

Today was a quiet day for Zoe.

She did really well with her breathing, fluctuating between 22%-29% O2.

They also increased her feedings to 15cc, since she is steadily gaining weight.

Our hope is she gets to two pounds by next week. It would be great to see her a bit more chubby.

We are excited to see next week Tuesday... her one month birthday!

We have been truly blessed with her and are excited to celebrate that day with her."

Amen to that. Sleep well Kim, Phil and most of all, sleep well ZAC...

Your GP

"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