Unfinished business: Some photos from a funeral

Jonelle and Dave brought over photos from Gracie Lou's funeral. They came in sometime last week. Jonelle and Dave asked me to post some for everyone who went through the trauma of Gracie Lou's brief time on earth with us this past spring.

So in case you wondered about how that went: Here are some photos from our family's very private funeral held in Virginia on the Lykosh family (Jonelle's older sister's family) farm back on September 12th. And a few comments from Dad/Grandpa John.

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Before I get to the funeral photos themselves, I'd like to show you the general location.

The first photo, below was taken from about where the "1" is on the aerial shot above and shooting toward the southeast. The second photo was shot about where the number "2" is in the aerial photo, and shot facing northwest. The gravesite is about at the "x" in the aerial photo. I took the photos below when I visited Amy and Phil in late July.

And with the location down . . . welcome to the funeral.

First, all participants were greeted by Cousin Isaiah, who handed out the program card at the gate just before we got to the tree line, heading down to the grave site.

Considering the mood, you might have wondered what we were doing.

I think there was a foreboding, however.

Phil had dug the grave a couple of days before the funeral and had brought down the gravestone a short while before the service--after Grandma and Grandpa Lilly arrived with Gracie Lou's body and the gravestone.

Those of us from Colorado--the ones who had been present through the entire trauma of Gracie Lou's birth, life and death, were so grateful that Amy and Phil had made the arrangements. I can't tell you what a great relief that was, that they had taken care of these things for us!

Doug Bush, an elder in the Lykoshes' church and an old friend of theirs, graciously agreed to lead us through the funeral service.

Again, a mercy. As you will see shortly, I think the rest of us were too close to shell-shock to have had to lead the service. (Oh, yes. I'm sure if we had been forced to do it, we would have pulled ourselves together. But I am extremely grateful that we were not called upon in that way!)

This photo illustrates the basic set up of the service, even though it was taken relatively late, when the service was almost over.

Doug had invited anyone who wanted to say something to do so. Dave's Mom/Gracie Lou's Grandma Bev shared a number of intimate memories from the few days Gracie Lou was with us. Here I was reading a passage of Scripture--Lamentations 3:4ff (through v. 23). --It seemed to express the bitterness of soul I--and I believe several of us--had been feeling . . . yet it expressed, too, an amazing change of heart and faith that, despite the hardships, I will "call to mind" and I will "hope": "The steadfast love of [YHWH] never ceases; his mercies never come to an end; they are new every morning" (vv. 22-23).

[Side comment: I have never felt comfortable singing the lyrics to "Great Is Thy Faithfulness" as they are written: "Morning by morning, new mercies I see." --Frankly, I don't usually see God's mercies. I have to ask Him to show them to me, because mostly I'm blind. And so if I am to say anything about God's mercies being new every morning, I have to say it strictly on the basis of hope and faith and most definitely not by way of sight!]

Doug pretty well followed the funeral service outline from the Anglican Book of Common Prayer. After that: comments . . . and then the reading of a number of Scriptures by members of the family.

The photographer shot photos of most of us as we stood during the service. I am stunned at what they tell of the impact this event was having in our minds and hearts and bodies at that time. Even the littlest ones.

Sister Natalia.

Cousin Abraham.

Grandma and Grandpa Lilly--Bev and Tom.

Aunt Amy (and Cousin Joe)

I find myself tearing up every time I see this photo. I told Jonelle I thought it was too personal.

"No, it's not," said Jonelle. "It is what happened. And people need to know it happened. But yet, in the midst of the sadness, there was great joy. . . ."

And so I share the photo here. Mommy Jonelle and Daddy Dave, Sister Natalia, with Uncle Justin and Aunt Mary in the background.

Something about this photo . . . the sag, the need for comfort, for support . . . we all needed it.

I was stunned to see how haggard I looked. . . . And I was only a grandpa.

. . . Yet, in the midst of all the devastation . . . (indeed, just before the interment) . . . I don't know how this happened, but, somehow, there was an emotional break. . . .

. . . And then, shortly after: the most solemn part. Entrusting Gracie Lou's body into the bowels of the earth. . . .

And the final acts of goodbye. . . .

Phil waited until we had all left before he finished the job.

"It really was a beautiful day," said Jonelle. "In the midst of the pain, there was great joy. . . . And who could ask for a more beautiful spot for a final resting place of someone's earthly remains?"

Prior to the funeral, we had spent an hour or two with a photographer taking family pictures on the farm. And afterward, the Holzmann side of the family enjoyed a scrumptious banquet at the Bushes' house, catered by a local chef who, I am told, has won some awards that hold international distinction.

Yes. All in all, a beautiful day. But, oh! So piquant.

Update: Gracie Lou, Natalia and Jonelle . . .

From the moment we were in the hallway at the hospital, we knew her name was Grace--"Gracie."

"But what about a middle name?"

"We're not sure yet," both Dave and Joneelle agreed.

"We're thinking we want to call her, informally, Gracie [loo]--short for Gracie [loo-ellen]. But we're not sure." [I spelled the middle name in the manner I have, here, because we only discussed sounds, not spellings. And I realize there are all kinds of ways to spell a name that sounds that particular way. The loo portion could be spelled Lew, Lou or Lu; the ellen portion could be ellen or ellyn, at least. . . .]

Anyway. This morning I received a phone call from Daddy Dave: "How do you spell [loo-eez]?"

"Well, normally, that would be L-o-u-i-s-e. . . . Why? Is that what you're thinking for her middle name?"

He handed the phone to Jonelle.

Story from Jonelle:

This morning, while I was in that halfway state between wakefulness and sleep, I got thinking: What about Louise for her middle name? . . . Dave hadn't been too excited about [loo-ellen]. But we both liked Gracie [loo]. So I asked him what he thought. He wasn't all that excited.

Then Dr. Anderson [the ob/gyn who delivered Gracie] stopped by and asked what we were thinking for her full name. And we told her how we have been thinking along the lines of Gracie [loo], and she said, "That's the name of my oldest daughter!"

"What's your daughter's real name?"

"'Grace Louise.'"

Well, that settled it! In honor of Dr. Anderson, Grace's middle name is Louise.

I asked Jonelle what spelling she wanted for [loo].

No hesitation: Lou.

So Gracie Lou it is.

--Pretty cool.

I looked up Louise in a name list. It's of Teutonic extraction and is the name of a famous warrior maiden. Kind of fits with a feisty fighter! :-)

*****

Some people have asked about older sister Natalia. With all the talk about Gracie Lou, it could seem as if she has been neglected.

She has not.

With two grandmas and, actually, since Saturday afternoon, two grandpas, too, to take care of her when we're not at the hospital, she is doing very well.

She has also had the privilege of visiting Mommy and Daddy a couple of times--once on Saturday morning and once yesterday morning. 

We stayed till 1 or 2 o'clock in the afternoon--three-hour visits--and then left.

Just a week or two ago, Jonelle had been telling us how poorly Natalia was sleeping at night.

Due to recognized wheat sensitivities in our family, we questioned whether perhaps Natalia's sleep problems may have been related. So Jonelle took her off of all wheat . . . and Natalia seemed to settle down.

Grandma Lilly, who has been staying with her at night, said she has been sleeping just fine.

And yesterday, as we sat in the yard (beautiful weather here in Colorado!), it struck me how affectionate Natalia was to her Grandma Lilly, with whom she has spent only relatively few days and hours during her 20 months. . . .

So Natalia is doing wonderfully.

*****

Finally, Jonelle. She is scheduled to be released this afternoon.

Her blood pressure yesterday was high (again). It had gone down dramatically, as soon as Gracie Lou was born, but then, yesterday it was something like 128/92. "And I haven't been on any blood pressure medicine," said Jonelle.

"When Natalia was born, I had high blood pressure for something like six weeks. And I was on medication that whole time. So I'm not too concerned," she said.

*****

Okay. That's the latest.

The latest on Gracie . . . with a bunch of photos!

Really good news!

They did an ultrasound scan of Gracie's brain and saw no blood . . . which is a very good sign, indeed!

"Her" nurse (at the moment--and maybe for another day or two--she has one particular nurse assigned specifically to her care) . . . "Her" nurse said all her vital signs have stabilized really well.

Again, we're not "out of the woods," but the signs are very hopeful. . . .

Once more, "her" nurse said she thinks Gracie will soon be assigned to share a nurse with another premie . . . because she is doing so well.

I thought I'd share a few photos with minor commentary.

Enjoy!

*******

It's so hard to give an idea of how big (or, rather, small!) Gracie is. . . . So we thought maybe a pencil would provide a clue. --Here she is laid next to a 7" pencil.

Well. . . . I don't think that quite does it.

"How about using a wedding ring?" asked Gracie's nurse, Diane.

So I handed mine over. . . . And, after sterilizing it, Diane proceeded to put it on Gracie's arm!

Gracie seemed to wear it as a badge of pride: "Doesn't it look great on me?!"

That still didn't do it for us.

"How about a measuring tape?"

"Actually . . . How big was she when she was born? I mean, how long was she?"

Perspective gives you a skewed view. She was 27.5cm long at birth . . . and here. --Just shy of 11 inches.

Well . . . It was time to feed her some more of Momma's milk. The staff had changed her breathing tube--replaced the original (tiny) one with one that is slightly bigger.

"It has made a world of difference," said Diane. "As soon as we got it in, all of her vital signs just seemed to settle down. She seems to really like it."

But in changing the breathing tube, they had to remove her feeding tube. --It was time to insert a new one. . . .

Diane just slid it in her mouth and down her throat! . . .

"Hey, hey! That's a lot of food!"

--I didn't notice how Gracie had thrown her arms up high over her head until after I looked at the photos. . . .

All the delicate ministrations of loving adults to this tiny little baby . . .

*******

Here's a picture of the apparatus that measures all her blood gas levels . . .

Amazing!

Well . . . A few last parting shots.

"'Bye-bye, precious baby! Keep up the good fight, little girl. Grandma and grandpa love you!"

Minor update . . .

I should have thought to post this last night.

First, thank you to everyone who has been praying for Gracie.

When we visited yesterday, she was looking good.

Key points from our meeting with the doctor:

• Her weight was up by 30 grams to 470 . . . "but she will lose weight."
   
• Potassium levels were low. --"If they go too high, her heart stops. If they go too low, her heart stops."
   
• Her liver function is low. (To be expected with such a tiny/premature baby.) She needs stronger liver function in order to synthesize the proteins she needs in order to grow.
   
• Her lungs--in some ways almost "the" most important item--are doing quite well. At the time we were there, they had her on a 32% oxygen mix. (Normal air is 20% oxygen.) In order to keep her lungs from collapsing, they provide just a little extra push, if I recall accurately, once every 20th breath. --Somehow, that doesn't sound quite right to me. I "just" remember that she is taking most breaths on her own--completely (though with the enriched oxygen mix)--and then, once every so many breaths, they kind of "hyper-expand" her lungs (just slightly) to keep them open. The machine showed a number "6"--I didn't ask, but I am going to assume that it might have indicated a minor pressure increase of 6 lbs(???).
   
• There are issues with surfactants in the lungs--the need to infuse her lungs every now and then with surfactants in order to maximize oxygen flow-through across the membranes.
   
• Blood sugar is an ongoing problem. The brain metabolizes most of the sugar in the blood. Her blood sugar was too low. They gave Gracie something (Sarita thinks it may have been the surfactant; I thought it might have been something for the adrenal glands; sorry, we weren't writing notes!), and, suddenly, the sugar went too high. --"It will take a while before we can get this properly regulated."

Mostly, we were encouraged that she seems to be doing very well. We heard, once more, "She is really feisty"--which is a good thing for a baby like this.

I was astonished at the technical details they have to watch.

One slightly, barely adjusted photo using my better camera. --She is under the bilirubin light, which makes proper exposure extremely difficult:

Trauma, tears . . . and guarded joy

Sarita and I were on the way to the airport this morning to visit our eldest daughter, son-in-law, four grandsons and semi-foster granddaughter in Virginia when we received the phone call:

"Jonelle is on her way into surgery for an emergency C-section. The baby (which we had been told was 26 weeks along) measured only for 22 weeks. It looks really bad. We will probably lose the baby. . . . And it appears there is some kind of cyst or something on Jonelle's uterus which means she will probably have to have a hysterectomy. . . ."

"Turn around! Turn around!" said Sarita.

We weren't going to Virginia.

Background: Late last week, the prenatal care doctor had warned Jonelle that she appeared to be suffering from pre-eclampsia (formerly known as toxemia). By Tuesday this week, the doctor confirmed the diagnosis, gave Jonelle a prescription for a blood pressure medication, and said, "Let's have you lay really low and see if we can keep things going for a couple of more weeks. If we can get you to 28 weeks, that's way better than 26 . . ."

Wednesday, Jonelle's blood pressure had come way down. Oh, joy!

But Thursday: Not so good.

A little side note: Knowing we would be out of town this weekend, and knowing of Jonelle's potentially precarious state, Jonelle's mother-in-law arranged to fly in last night to "be there" for Dave and Jonelle over the next 10 days.

Well, last night, Jonelle could not sleep. Her entire body was spasming and giving her terrible pain.

Finally, at 4:45 this morning, she woke Dave: "Dave, I can't stand it anymore!"

Dave called the Kaiser number and a nurse answered. "It sounds as if you're dehydrated," she said. "Please drink a lot of liquid . . . and I'll call you back in half an hour."

Half an hour later, Jonelle had drunk 40 ozs of water and promptly thrown it all back up.

Off to the hospital . . . with gratefulness that Grandma Lilly was there to take care of Natalia.

We got a call at about 5:40: "We're at the hospital . . ."--and the story of the rough night.

"Should we go to Virginia?" asked Sarita. "Should we stay?"

I suggested we go. "What can we really do, here? Jonelle is in good hands."

But then, at about 8:30, we got that call I mentioned up top . . . as we were on the way to the airport.

We turned around. Sarita and I took a while trying to undo what we could of our travel plans (see if we could salvage some of the expenses) and sent news to our prayer networks. And we made arrangements to pick up Grandma Lilly and take Natalia to her cousins' house, about five miles up the road and, more or less, on the way to the hospital. There was pleasant talk and smiles while Natalia was in the car. As soon as we dropped her off, however, tears began to flow. Crushing emotion. . . .

--All this trauma and no baby to show for it! . . . And with a hysterectomy, no more opportunity for any more children (or grandkids)!

--Why, Lord, do you give people who don't even want kids multiple pregnancies only so they can abort them . . . and then those of us who want them lose the babies or lose the ability to bear them? . . .

As the three of us checked in at the hospital (about 45 minutes from home) we were told that "the baby is born" but momma is still in the operating room. . . .

No word on how anyone was doing.

We waited about 10 minutes in the hallway outside the OR, tears, praying. And then a team of about four or five nurses and orderlies came out of the OR with a wheeled infant carrier.

"Is that the Lilly baby?" we asked as we sprang to our feet.

"Yes," they said--it seemed they were almost beaming. Someone said, "Grace Lilly."

The parade stopped and they let us get a very brief look at her tiny head under a blanket beneath the gentle hand of one of the orderlies.

Then they moved on.

Dave had been at the end of the train. I didn't recognize him with the full surgery scrubs he was wearing.

Hugs all around and then he was off behind the hospital staff.

"She looked good!" someone said. "Nice color!"

"Oh! She is so tiny!"

"Did she have any breathing tubes?"

"I don't think so!"

"Can it be? Is she okay?!?"

"They wouldn't have been so casual, would they, if she had been in critical condition. . . . Would they? . . ."

Longer story shorter:

It turns out the mass that had worried the medical staff before surgery was within the placenta itself . . . and may have been what caused Gracie to be so small (about half the size a normal 26-week-old intra-uterine baby should be). The mass may have been stealing most of Gracie's nutrients. Jonelle's uterus appeared perfectly fine.

The doctor made one of those comments that "says more" than she may have known: "We will need to watch you even more carefully with your next baby. . . ."

After everything had settled down, we were able to talk with the doctor. She explained that the abnormal placenta itself could have caused the hypertension (high blood pressure) and pre-eclampsia. Possibly.

We can hope.

Still, if there is to be any future pregnancy, Jonelle will be considered in the very high-risk category.

Momma Jonelle is doing fantastically. She looked better after a couple of hours following the C-section this morning than she did after days and days following the birth of her elder daughter in July 2008. . . .

Gracie: Born at 10:05 MDT this morning, 4/16/10. Weight at birth: 440 grams--15.5 ozs. Can she survive?

The nurse with whom we spoke in the NICU (neonatal intensive care unit) said she has cared for two babies who were smaller than Gracie . . . who survived.

The attending doctor said the real crucial period for babies like Gracie is the first 72 to 96 hours (through next Monday or Tuesday). "If she makes it past that--if she makes it," said the doctor, "then we can begin to talk about what next. Right now, we just want to do what we can to keep her alive." He said one major threat is bleeding in the brain which could lead to long-term issues like cerebral palsy or other problems.

The doctor said Gracie is in the "honeymoon period" right now. Usually, the second day things start going really poorly.... At the moment, however, she has good oxygen.

Her white blood cell and red blood cell counts, however, were both low, so the doctor intended to give her a transfusion. ("Babies like this will often have up to eight transfusions," he said.)

Gracie also had low blood sugar. "We'll be trying to bring that up. Of course, then we will overshoot, and we'll have to bring it back down. . . . It usually takes a few days before we get it just right," he said.

The doctor and several other staff members commented: "She's a real fighter." Yeah. "Feisty" is a word we heard a few times.

As I've said elsewhere: We appreciate your prayers.

A few photos:

Dave and his mom next to Gracie's high-tech incubator.

Tiny Gracie under the blankets.

You'll see a little reflection over her chest. That's some kind of cellophane in which they wrapped her to hold her tight and limit her movements.

Now you see the cellophane more clearly. Look at that little left hand working its way out, though!

She has almost broken free . . . and she is stretching toward those IV tubes into her umbilicus. --We wondered whether she was going to pull them out. --As I said, she is one feisty kid! :-)