A Trivia Question

Riddle me this…”Who weighs four pounds and is painfully adorable?”

Well… the answer is ZAC – a.k.a Zoe Ann Casmer, who managed to hit the 4 lb milestone last night or as Kim so eloquently put it, “She is getting so big and all her cheeks are chubby!”

So what are the long range plans for Zoe, based on her achievement of this milestone? Well, the plan is that in a week or so she is to be moved to an open crib! She will still be monitored to ensure she can maintain body temperature, heart rate, breathing and such, but the constraints of the plastic box will be gone.

As for her feeding, Zoe is continues to do well with her nipple feedings and she has now graduated to bottle feedings twice a day. She is also being weaned off of her caffeine and air support over the next couple of weeks to see if she can "fly solo".

We are praying that the past few days will be a good indication that it will be successful and we invite all of you to join us in our prayers of thanks and praise for what He has done as well as our entreaties for His continued blessings on this child.

- ZAC’s GP

Kim Provides a Sunday Update

Kim writes,

"Hello all and before you ask, 'How did the ultra-sound go', I'll be proactive and answer...It went alright.

The damaged areas of Zoe's brain continue to dissolve, but it seems that so far there is no clotting. (Which means no additional damage is being created). This is good because it means we can avoid having surgery to put in a reservoir and then later a shunt. So I guess the overall status - stable.

The past couple of days nipple feedings haven't been as good as they have been, but we figured this is due to her still learning.

... And if you live in the 'Great Midwest', I hope you are enjoying the snow.

Kimberly

HO! HO! HO!

Editorial Comments Abound

Hi all,

Hope things are well for everyone.

The nurses and doctors decided not to go with the continuous feed. Rather they just changed her 'High Flow' settings so she is getting more stimulation to help her breathe. (Editorial Comment: Those darn medical-types!)

With this being said Zoe is still on her once a day bottle feedings in order to work on that coordination and built up her strength and stamina. (Editorial Comment: Awesome!) Phil and I got to witness the bottle feeding exercise this morning. 20 minutes later, Zoe had finished the entire bottle! This sight was amazing, especially since the previous day she just got tired out so easily. The therapist and nurses were very excited about her development.

We hope (Editorial Comment: And pray!) that this continues, but know that this was a unique event (Editorial Comment: I disagree!) and working up to regular bottle feeds will still have its ups and downs. (Editorial Comment: I agree, but remain optimistic!) The holiday remains busy and quiet. (Editorial Comment: Just a bit of a contradiction there, Kim.)

Merry Christmas and Blessed New Year,

(Editorial Comment: ZAC's GP & GM say Merry Christmas too!)

Kimberly

An Evening Poem

T’was tonight after dinner, when it rang through the house…
My cell phone was buzzing, so I shouldn't grouse.

Kim had called to say hi and to leave a report…
She was heading back out so she kept it quite short.

ZAC was still doing well, but her feedings ‘had issues’…
No drama, no tears, and for certain NO TISSUES!

The volume of food ZAC was made to intake…
Was stretching her stomach beyond what it could take.


Thus it was decided that for her own good…
Continuous feedings to happen it should.

Beyond this small hiccup, ZAC was still doing great…
Fourteen inches in length, three pounds six in her weight.

Kim was heading back up to see her dear child…
And I thought of another, quite meek and so mild.

So when hassle and haggard vex this holiday…
Find time for reflection, find time to pray.

Sleep well, little girl.

- ZAC’s GP

Dad says, "SHE CAN EAT!"

All,

Just got a call from the hospital. The nurse said that she caught Zoe at a very calm but wakeful moment and so she decided to try the slow-flow nipple feeding.

She said that for about 15 mins Zoe drank about 5cc’s of breast-milk from the bottle. She did not spiral down in oxygen levels, which means she was sucking, swallowing, and still breathing.

Jenn (the nurse in NICU) was very happy about it. She said they will attempt to do that once a day until she’s a little bigger.

Praying for lots of big miracles, God also blesses us with little, wonderful ones too.

SHE CAN EAT!

Phil

Eighth Week Anniversary

... And a cool new outfit.

Say, do animal prints make me look fat? I hope not. I want to look my best for my Eighth Week Anniversary.

Happy Eighth Week Anniversary to me... Happy Eighth Week Anniversary to me...

Have a great weekend everybody, because I will!

- ZAC (Okay, my GP helped me type this up.)

Be Still

"Be still, and know that I am God; I will be exalted among the nations, I will be exalted in the earth." - Psalm 46:10

Zoe achieved the 3 lbs and 1 oz milestone last night.

For us, there will be lots of prayers still...

And lots of hope for the next months and years.

- Kim

The Specific Reason…

Yesterday’s post contained few specifics as to what the concerns of the doctors and the staff of WMH NICU were. This was done on Kim and Phil’s request in order to contact and inform the family rather than have them hear about it here ‘first’. Since this is now done, perhaps a bit more of an explanation, concerning Zoe’s condition is in order. I preface this explanation with a simple statement from Kim, “Just praying for a miracle right now.”

The MRI of Zoe’s head indicated that the right ventricles of the brain were growing. This could have been caused by swelling of the brain or perhaps bleeding, but it was not. Instead, what the ‘second opinion’ revealed was that there were large areas of damaged brain tissue in ZAC’s right brain hemisphere which her body was reabsorbing. The space created by this absorption was being filled with cerebral fluid.

The cause for concern surrounding this development was not so much about the absorption or the fluids, but rather the potential for long term damage already having been done that would cause the brain to go into this ‘mode’. The doctors theorize that while in uterus, Zoe may have experience a stroke which both damaged the brain and spurred her premature arrival.

Following the MRI review, the doctors… cautious as always in the choice of words they used, painted a picture that spanned the distance from stark and bleak in outlook [as it applies to the potential from long term disability and brain damage] to the possibility that Zoe might be able to ‘reprogram’ her brain so that the functions performed by the damaged/missing area could be taken over by the other hemisphere, and thus be ‘normal’. [I question the relative merits of normalcy, but that debate is best kept for another day.]

The next milestone is finding out if Zoe can coordinate the suck, swallow and breathe regimen, a function that should be ‘second nature’ by the baby’s 36th week of development. Since ZAC is only at 30 weeks of development there is still time to go on this, and beyond this new hurdle she continues to grow, breathe, her heart is strong and she is active.

On a personal note, after speaking to Kim at length last night, I can only reiterate what I said then. Understanding the will of God is often clouded from the minds of mortals. I would not begin to hazard a guess as to why this has happened to Kim and Phil and Zoe… to all of us, but suffice it to say that regardless of the end result, it will be to His glory.

If Zoe does indeed have to contend with brain damage, Phil and Kim will be most excellent parents, Zoe will remain a child of God and He will be glorified.

And if Zoe has to contend with a limited disability or a learning complication,
Phil and Kim will be most excellent parents, Zoe will remain a child of God and He will be glorified.

And if He allows Zoe to develop, grow and thrive… unhindered by any disability,Phil and Kim will be most excellent parents, Zoe will remain a child of God and He will be glorified.

If He chooses any option other than the third, will He be less glorified? I think not, and while we would pray and plead with Him for this third option to be His option of choice, it must always be remembered what He said to Paul…

"My grace is sufficient for you, for my power is made perfect in weakness."

- ZAC’s GP

Prayers Re-Doubled

As days go, this one has been less than stellar.

With the memorial service for ZAC’s great-grandmother still fresh in our minds, Kim called to report a significant and serious complication that the MRI discovered with Zoe. According to the doctors, the ventricles on one side of her brain were enlarging and it appeared that they were filling with fluids. The ‘pictures’ were being sent to another hospital for a second opinion, but the general prognosis was not good.

I know that each of you out there have been in constant prayer for Zoe since this all began eight weeks ago, but I would ask now that your prayer efforts be redoubled, not just for Zoe’s life and health but for Kim and Phil’s strength and peace of mind.

May His will be done, but may He also allow us the eyes to see that it is His will as well as the mind to understand it... or at least accept it.

ZAC’s GP

Check Out My New Outfit... Heck, check out that smile!

All,

Zoe continues to do well and she is currently eating 24CCs to support her 2lb and 12 oz body.

She is alert when it comes to her occupational therapy and when the nurses come around to check on her. She is also now sucking on her fingers as well as the pacifier.

By all the nurses' and doctors' opinions, Zoe is doing what she needs to do to get home. It will still be quite a while, but comforting to know that she is on the right track.

We are patiently waiting and praying for that day.

Kimberly

A Time for Everything

There is a time for everything,

and a season for every activity under heaven:

A time to be born and a time to die,

a time to plant and a time to uproot,
a time to kill and a time to heal,

a time to tear down and a time to build,
a time to weep and a time to laugh,

a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,

a time to embrace and a time to refrain,
a time to search and a time to give up,

a time to keep and a time to throw away,
a time to tear and a time to mend,

a time to be silent and a time to speak,
a time to love and a time to hate,

a time for war and a time for peace.

- Ecclesiastes 3:1-8

All,

Well today went very well with Zoe and the "High Flow Canula". She was on room air for most of the day resting peacefully. She continues to gain weight steadily, now at 2 lbs and 8 oz!

The occupational therapist did have to put a splint on her foot to help straighten it out. They said that this is pretty typical for such a small baby that does their growing in a bed.

With lots of prayers and her sheer determination, Zoe is making huge strides to coming home.

Kimberly

Patience Practiced in Earnest

All,

I just wanted to give you an update on Zoe.

The doctor found no change on her head ultrasound since last week, which is good, but after last week I was hoping for more. Patience again is being practiced in earnest.

Zoe continues to do well with her feedings, but the staff is looking to get her growing at a slightly faster rate. They have added more protein to her milk in order to do this. She is now up to 22CCs on her feedings. They also did not switch her off CPAP yet since Zoe had a bad night last night, thus they decided to give her another day and hope that Wednesday will be a better day to make the switch.

Kimberly

Zoe, Meet your Great Grandmother…

Josephine Ann (Greisbeck) Lacher,
Died 12/8/2009

She was born almost a century ago in a far away land. She enjoyed great times as well as horrific ones. She married and moved to this country, where she and her husband gave life your grandfather, who gave life to your mother, who gave life to you. She too suffered many ills, yet she overcame them. She too was tried and tested, yet she stayed the course. Though you will now never be able to meet her, suffice it to say that her greatest wish was to see you. You would have liked her, and she already loved you. I just thought you should know.

- Your GP

Mondays Can Be Good

Evening All,

Things with Zoe are going well.

They (WMH-NICU staff) are slowly weaning my little girl off the CPAP and they hope to have her on the cannula (nose tube) on Tuesday. They have also increased her feedings to 22CCs since she has been gaining weight steadily.

Tuesday will be another ultrasound on her head, again we are praying to see the ventricles shrinking and the clot dissolving.

Other than that, it is a fairly quiet Monday.

Kimberly

Saturday Bath

All,

Today Zoe got her first tub bath! The nurses took out her CPAP, and gave her a nasal cannula (a nose breathing thing) to take her out of her isolette (her little, clear plastic room). She seemed to enjoy bath time once she realized what was going on, she especially enjoyed sitting in the warm tub.

We have also now heard Zoe cry, they are pretty small cries compared to larger babies, but pretty beautiful noises to our ears nonetheless.

The doctor feel Zoe is doing well, especially since they modified her feedings to every two hours and she is still tolerating the CPAP well… room air to 24%. They modified her vent settings to allow her to do more work and this evening they are going to try and go back to 3 hour feedings. We are a bit apprehensive, but the doctor feels that now she has had a few days to get used to the CPAP she may be ready for the next step.

We continue to pray that Zoe and all the other babies in the NICU continue to do well as we celebrate our Savior's birth.

Kimberly

Six Weeks Down

All,


Things with Zoe have been kind of up and down for the last 48 hours...

When Zoe was initially placed on the CPAP the nurses used short prongs to 'attach' it. This worked well for about the first eight hours but the air flow just was not getting to her lungs. To combat this, they decided to use longer prongs, thus preventing Zoe from wiggling out of the device. They also gave her another transfusion to help move the oxygen around. This seemed to do the trick, until until her feedings.


With Zoe on 19CCs every three hours, this combined with all of the breathing she now had to do on her own... well she would quit breathing on her own. (Obviously not a good thing!) To correct this, they now have her being fed every hour 6 cc (small meals, more often) and she has been given a dose of antacid to help.


Since this regimen change [early Thursday morning] Zoe has done spectacularly well!

Her oxygen settings are 21%-24%, she is breathing comfortably on her own and has had no significant drops in her rates.

We are continuing to see her exercise in her occupational therapy. The therapists feel that she is doing well and making progress at the appropriate rate.

Six weeks down :)

Kimberly

Goodbye E.T.

With apologies to Steven Spielberg, it was time for E.T. to go home. As important as the ET (endotracheal tube) was in aiding and assisting with ZAC's breathing it did have certain drawbacks, namely it obscured Zoe's face. In addition, Zoe had developed a severe dislike for the device and spent more than a little time attempting to remove it.

The first attempt at the ET removal and moving Zoe to a CPAP was less than a rousing success but at the time, the doctors attributed this to her age and level of development/maturity and decided to postpone the removal. Well, December 1st was the new scheduled removal date. Here is what Zoe's proud mama has to say about yesterday's events...

All,

After a busy Tuesday this is where things stand for our 2 lb and 2 oz little champ.

The doctor called this morning to state that the radiologist saw a decreased size in the ventricles. The clot is continuing to dissolve and soften. They are going to continue to monitor this on a weekly basis.

Also this afternoon they removed her ET tube and gave Zoe the CPAP. She seems to be handling it well, though she will occasionally try to wiggle out of it or get tired of breathing. The nurses are very quick to get her settled or her heart rate back up. We are praying that this continues to go well so she can move forward on the bath to be breathing accessory free.

The remainder of the week will be all about keeping up her feedings and getting her to grow. We are praying that the Lord continue to bless our little girl.

Kimberly

So How Did It Go Yesterday?

All,

Zoe is did really well with the kangaroo this evening (Monday evening). She is sleeping and and eating really well also. The plan for Tuesday is to remove the Endotracheal tube (ET) and put in the CPAP. We are praying this goes well and she breathes on her own.

They also did her head ultrasound, though we have yet to hear the results from the DR. Other than those two big things it seems like the staff are keeping it low key for the rest of the week...

So lots of prayers on breathing, brains, and continued growth.

Love,

Kimberly

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

... 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