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.

*******

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.

Thank you so much!

[Written last night, in anticipation of our leaving this morning.]

Words cannot describe how significant the support of all my/our friends has been over the last two weeks.

Sarita and I are headed out of town this morning for almost two weeks. We're traveling down the Yangtze River, looking forward to visiting the Three Gorges Dam and "simply" enjoying whatever we can learn of central Chinese culture.

I am expecting it will be a good "time away" and "time off."

Monday night, Dave and Jonelle called: "Will you come and pray with us? We just don't think we can go to sleep."

And so we had a time of prayer . . . after a bit of pointed, heart-to-heart sharing of feelings and thoughts one doesn't normally say out loud.

As we prayed, it struck me: We are all wounded.

Jonelle is still recovering from the wounds of her C-section--a major pair of wounds . . . one on the outside--a major horizontal cut--and one on the inside, a giant vertical cut into her womb . . . far bigger than "normal" because the doctors wanted to be able to take Gracie out with as little trauma to her as possible.

But Jonelle is still left with that wound and still needing to heal.

But Jonelle is not just left with that wound.

Her heart is wounded, too. And, as she has said a few times, she is also reminded regularly about that wound by the fullness of her breasts as they produce milk for a baby who won't be needing it.

Pain upon pain.

But with all of Jonelle's pain and all of her wounds, sadly, she is not the only one who has been wounded. Dave's heart, too, has received an ugly blow.

And so has Sarita's. And so has mine.

I do not want to equate any of our wounds. They are not equal. They are not the same. But they all need to heal.

Wounds take time to heal.

And so we have agreed together that we will give each other the time we need.

Sarita and I are so grateful that Jonelle's older sister, Amy, will be coming to town while we are away, so the two sisters--and their two children (only two weeks apart in age)--can enjoy each other's company.

A tribute to hospital staff who astonished us . . .

[Finished just before I received the emergency call about which I just posted.]

Dave, Jonelle, Sarita and I talked about this several times over the last week and a half/two weeks: The staff in the Labor & Delivery and Neonatal Intensive Care Units at St. Joseph Hospital/Denver absolutely stunned us. At one point, Dave and Jonelle said, "They have reestablished our faith in the medical profession."

I said, "What? . . . Why?" --And part of my question arose from knowing (or sensing I knew) how well Jonelle had been cared for during her last delivery in which she had had to undergo an emergency C-section to save her life.

What we discovered, partially by pure observation, partially by conversation, were--among many other points, I'm sure--these things. And I want to list them by way of tribute.

Overall: the staff of St. Joseph's Labor & Delivery and Neonatal Intensive Care Units communicate effectively. But this is how that looked to this observer:

• To quote the doctor who pulled us aside on Saturday evening and sat and talked with us for half an hour (or, at least, to convey the gist of what he said): "We have a saying here: 'We are here to treat the entire family' . . . because the whole family is involved in what is going on." Therefore, our questions and concerns were important to him . . . and to the other staff members. --He . . . and they, all . . . communicated that message through their actions. Consistently.
  
  We, all of us, were important to them. And they proved that.
  
  How?
   
• As they walked into the room (while Jonelle was in the hospital), and when we walked into the NICU (when we would visit there), they made sure to greet us, to identify who they were, why they were there, and what their roles were . . . and, though it was not so noticeable to us, they made sure to identify each one of us and to acknowledge who we were and why we were present. --This was something we noticed immediately, within minutes of first entering the recovery room following Jonelle's surgery. Just the act of identifying themselves by name . . . and honoring us--and themselves--by making sure we all understood each other's roles.
   
• They listened intently to whatever we had to say, whatever questions we had.
   
• They looked us in the eye--each one who asked a question--as they answered our questions. There was no looking around, no "being distracted" with "other duties" that might call.
   
• They communicated thoroughly.
   
• They communicated knowledgeably.
   
• They communicated as much as we wanted to know and in a patient and astonishingly unhurried manner.
  
  --It was clear: Our questions mattered.
   
• They communicated in a manner that honored the hearer--whether it was any one of us who was a member of the family, or it was another member of the staff. --I never saw anyone "talk down" to someone else.
  
  All of the above meant,
   
• There was amazing unity among the staff. We saw no dissension or distance between doctors and nursing staff. They fully honored one another as fellow professionals and human beings.
  
  Continuing with the theme of excellent communication:
   
• They told us [and now I am speaking primarily in behalf of Jonelle and Dave] . . . --They told us what they intended to do and why they intended to do it . . . before they did it. Always. Consistently.
   
• They fully explained what they were going to do if we ever had any questions.
   
• There was no sense on our part that we needed to "shut up" and simply acquiesce to their treatments.
   
• We, all of us, were an integral part of the treatment process.
   
• They were all well-informed of what was happening. (Noticeable: Every shift, the staff who were coming on made sure to engage in a thorough debriefing from and by the staff who were departing.
   
• They were well-educated about the issues they were dealing with. They could speak knowledgeably with us on whatever topic was of concern. And yet even as (for example) one of the nurses fully explained a matter, she would offer--indeed, make the effort--to pull in a doctor: "_______ asked ________. Would you mind explaining it to him [or her]?" --What an amazing experience to hear virtually the same explanation, in slightly different words, from two different sources! What wonderful confirmation of competency!

Much of what I have said here, at this point, seems so reasonable.

But, as Jonelle and Dave noted, these are not typical of what they experienced 20 months ago at another local hospital.

*******
One more observation.

I believe it was Saturday night, as four of us were gathered around Gracie Lou, as tears were flowing, as prayers were being said . . . it struck me what a difficult job these staff members--especially the NICU nurses--have during times of deep distress and stress on the parts of the families.

How do you know when to speak up? How do you know when to be silent? How do you know when to maintain a distance when the family needs to be left alone and, yet, to "be there" for them when they need someone to buoy them up?

How do you know when to speak words of encouragement and hope (when, otherwise, the family would be given to potentially needless despair) . . . and when to speak words that communicate about the potential gravity of a situation (lest family members hold out wildly inordinate optimism)?

I am astonished at how the staff of St. Joseph Hospital did all of these things . . . and did them well.

Thank you to all the staff at St. Joseph who touched our family. You have blessed us deeply!

Jonelle on the way to the emergency room . . .

Dave just called: "Jonelle is bleeding out of the vagina."

They dropped Natalia off and then raced to the closest hospital. "She is almost fainting!" Dave called as he ran to the car.

. . . Meanwhile, Sarita and I are supposed to leave for the airport in an hour.

We are supposed to be going to China for two weeks.

"I want you to go," Jonelle said. . . . She just called from the car as they were still on the way to the emergency room.

Luke is picking up Natalia.

Gracie Lou finished her earthly battle . . .

Mommy and Daddy spoke gentle words of blessing to her as her time came closer and closer.

The LORD bless you and keep you.
The LORD make His face to shine upon you and be gracious to you.
The LORD lift up His countenance upon you and give you His peace. ["Peace," echoes Gracie's older sister, Natalia, whenever this prayer is said.]

--Numbers 6:24-26 (a special prayer in our family)

Shortly before 11, Mommy and Daddy decided it was time for her to make that final journey.

"Can we just keep her comfortable?"

"She is comfortable," the nurse assured us. "But we will keep watch, just in case."

She was taken off the oxygen oscillator at 10:58. Her oxygen levels actually went up for 10 or 15 minutes afterwards. But then they began to subside, as did her heart rate. She had been fighting so hard. Heart rate right around 180. . . . But then it slowly came down. . . . 133. . . . 121. . . . Oxygen bouncing from 18 up to 65 then down again. . . . Heart rate 99. . . . 93. . . . Sometime when it was down in the 60s, the nurse asked if we would want to remove the monitor so we wouldn't be distracted by watching the numbers.

"Yes, thank you."

Gracie Lou  rested comfortably against her Mommy's chest throughout--except for a few minutes while Daddy held her against his. Then back to Mommy for the end.

Sometime between 11:30 and 11:45, she left us. Jonelle, Dave and I prayed together during that time. Many tears. But joy, too, that her struggles are over.

Two exhausted, bereft parents are heading home to be with their older daughter right now. I do not know of plans for memorializing Gracie Lou nor for disposing of her body.

Thank you, all, for "being there" with us through this difficult time.

Gracie Lou: They are going to put her on Jonelle's chest . . .

I am not trying to be euphemistic. We have been told of at least one "miracle" when a baby boy, just a few years ago, in a very similar circumstance, was put on his Momma's chest to die . . . and that was when he revived.

I am going up to take a few last pictures, God willing.

Gracie Lou: Just got off the phone with Jonelle . . .

"She's stable, but her oxygen is in the 60s, which is not a sustainable situation. They have her on everything they can possibly give her. 100% oxygen. At the highest pressure. They stopped giving her the [bicarb] at 5:15. They said it would take another hour or two for that to wear off. But she is still hanging in there.

"We have said, 'Lord, what You will do, do quickly. Either heal her or let her go. Peacefully. Quickly. Let it not be in the midst of some kind of crisis. If we are to rejoice, then let us rejoice. If we are to grieve, then let us grieve. But don't prolong this!"

The NICU lifted its ban on siblings coming to visit as of 15 minutes ago--8 o'clock this morning.

If Gracie Lou is still hanging in there in another hour or two, Jonelle said, and as long as they haven't simply put Gracie Lou on Jonelle's chest to die--"Why don't you bring Natalia up so she can meet her sister?"

. . . So that's the latest.

Gracie Lou: One more round?

I just called the NICU to see what might be happening. "Could I speak with Dave or Jonelle?"

"I think they might be asleep. . . ."

"Well, please don't wake them. . . ."

A few moments later: "Yes. they are both asleep. The baby is stable at the moment, but they will have to do her care, here, pretty shortly. . . ."

Yeah.

Natalia and Grandma and Aunt Becky seem to be doing fine.

Gracie Lou: It's almost two hours since Dave called with "the latest" . . .

At the time--about 4:25 this morning--they had stabilized Gracie Lou, but her blood oxygen percentages, Dave said, were in the 70s (that's low), and she was on some kind of bicarb, to reduce the acid in her blood from too much CO₂.

"They say that, in another hour or so, the bicarb should start wearing off, and then they figure it will be another 20 or 30 minutes," he said.

His voice was flat. So was mine.

Actually, when he called, it was not to give us an update on Gracie Lou, but to ask that one of us get over to their house when we awakened, so we could be there for Natalia . . . who is being accompanied, at this time, by her Aunt Becky, Dave's sister, who flew in, rather unexpectedly,  late last night. "Natalia hardly knows Becky," Dave said. "It would be nice for her to have someone familiar present when she wakes up."

Sarita is about to leave for their house (just a couple of blocks away) in a few minutes.

There's exhaustion all around.

Gracie Lou: Dave & Jonelle are on the way to the hospital for the second time . . .

"Gracie Lou is sinking fast. We cannot get her vital signs to stabilize."

They received a call like that at 6:30 last evening, in the middle of dinner and raced to the hospital. But a shot of epinephrine helped bring her around.

They received another call like that at around 1:00 this morning (I'm guessing).

Sarita and I received a call from Jonelle just 10 minutes ago or so: "Dave and I are on the way to the hospital."

I don't know how much more of this kind of craziness we all can take. At this point, Gracie Lou suffers an "event" every time her diaper is changed.The hospital has deliberately chosen to extend the time between her "care" so as to reduce the frequency of these events. But as they seem to be becoming successively more and more destructive . . .

"Lord, what You will do, do quickly!" I prayed with Jonelle just now.

Good night.

Gracie Lou: Rough night

Sarita and I attended a most wonderful wedding and dinner reception for one of our employees, then took off to visit Gracie Lou.

We arrived on the NICU to find five or six or seven medical staff huddled around her bed, Dave and his mom standing outside looking in, tears on their cheeks, praying.

"What's happening?"

"They were doing her regular care [change diaper, change bedding, etc.] and then they switched her around, and they can't get her oxygen levels to normalize." --Dave was obviously in deep distress. "This is the second time today! They should have Dr. _________ here whenever they are going to do that. They know it's going to happen! They should just have her regular nurses and Dr. _______, and then this stuff wouldn't happen! I'd like to punch somebody out!"

"Whoa! Whoa! Whoa! Dave! . . . Maybe you shouldn't be here!" I responded. And then immediately repented that I had said anything.

High emotions. Not good.

The struggle went on and on . . .

Dave said they had been at it for five or ten minutes before we got there. And now it was 10 minutes into our presence. And still they struggled.

"Where's the line?" asked the lead doctor. "What's the number? What's the number? Where are we?"

"Five."

"Try five and a half. . . " [Based on previous experience, they are talking about markings on the breathing tube indicating exactly how deep the tube is being inserted into Gracie Lou's mouth. I believe the numbers may refer to millimeters. They are certainly only tiny fractions of an inch.]

"Give me 12 liters of oxygen."

"You've got it."

"No. I'm not getting 12. I'm getting too much! Please! Twelve!"

Tension.

"We're at 12."

"It's not right!"

And so they struggled. . . .

"Come on, baby! Come on, baby!" Two grandmas are praying in the hallway. Daddy is in tears. And grandpa is taking photographs. . . .

"Okay! Okay!" says the lead doctor. "You've got the tube just right! Let's tape it. Right there."

It's been 15 minutes since Sarita and I arrived.

The doctor continues to pump air into Gracie Lou's lungs. . . . Eventually her numbers begin to rise . . . and the staff begins to back away from the bed.

It's been twenty-two minutes since Sarita and I arrived. And, according to Dave, another five or ten minutes more since the episode began.

Eventually, as the doctor begins to walk out of the room, Dave pulls him aside. His voice is strained.
"Can we please stick with staff who know her? . . . And can they wait until you are here before they do this kind of stuff?!? . . . This happens every time!"

Graciously, patiently, humbly, the doctor seeks to console . . . and comfort . . . and explain.
"I would trust every one of these staff members with my life," he says.

"Shall we go someplace and sit down?" invites the doctor. "Let's go sit down and talk."

Soon the five of us--Dave, his mom, Sarita and I, together with the doctor--find ourselves sitting in the "family" room off to the side of the NICU. And undefensively, gently, with utmost consideration, he answers every one of our questions and explains the real gravity of the situation.

I will confess: Tonight things sounded very grim. For the first time I got the sense that the doctor is not too hopeful. "She is as sick as they come." "Normally, preemies' lungs don't look as bad as hers do until a month or so after they have been born." "Her lungs have become far more damaged far more quickly than normal." "One of these times, she is going to have one of these episodes, and we won't be able to pull her through." "There were a couple of times today when I honestly thought we had lost her. . . ."

******

Eventually,  with our questions answered, we returned to Gracie Lou's cubicle where we were able to enjoy a few last moments with her. . . .

"Goodnight, Gracie!"

******

Prayer needs: 

• Besides the obvious miracles to see Gracie's lungs healed . . .
  
  
  
• I think the adult members of the family could use prayer that we don't blow our own relationships apart in the midst of the stresses and strains of the situation as it is and as a result of the fact that we differ in the way we handle grief and fear and frustration.
  
  
  I have heard stories of husbands and wives whose relationships were unable to withstand the strain of this kind of experience. I pray our extended family will withstand and, in fact, grow, through this trying time.

Thank you.

Gracie Lou: Amazed . . .

Following the Thursday scare, we really are amazed at how well Gracie Lou is doing.

Sarita, Jonelle and I went to the hospital last night and spent a couple of hours with Gracie Lou and her nurses. Diane, her day nurse--normally on-duty from 7 am to 7 pm--was still there at quarter to 8. She gave us a picture she had taken earlier in the day of Dave and little Gracie Lou.

None of us had ever seen her outside of her incubator. But Dave was there, apparently, when they were doing some major reorganization. . . .

"How's she doing with her weight?" asked Sarita.

"She is 570 grams!"

I think that is pretty amazing. She was born last Friday at 440 grams. On Saturday, she went up to 470. Sunday, she was back down to 410. Since then, she has been on a steady rise. 570 grams marks a 30% increase in body weight in the course of a week.

Of course, she started out at half the weight she should have been for her age. So she still has a lot of catching up to do. But it's nice to know that she's gaining weight.

Here day nurse Diane is showing her photos to Sarita and Jonelle:

Meanwhile, just around the corner, the respiratory therapist and night nurse, Maegan, were turning Gracie Lou around.

Lying on her side as she had been, GL's lungs were developing at different rates. They wanted to give the other lung a better chance to catch up:

Poor kid! Being jostled and [wo]man-handled at every turn: poke, prod, yank, nudge, pull this cord, shift that tube . . .

The rearrangement went on for, I would guess, five minutes. . . .

. . . And I winced all the way through. Gracie Lou, however, seemed to take it all in stride . . .

Of course, her blood oxygen plummeted briefly. I didn't see it, but Jonelle said she saw it fall to 40 before bouncing back.

Gracie Lou has been doing amazingly well. Thursday, they had her on 100% oxygen and, as I reported, the doctors seriously questioned whether she would make it.

By mid-morning on Friday, she had been quite stable all night and they were able to wean her back to only 40% oxygen and her numbers continued to look good. But by the time we got in last night--what with all the moving and jostling, her number weren't looking so good, and she was up to 92% oxygen feed. . . .

"What's going on with her oxygen levels?" we asked.

The staff explained: Every time something upsets Gracie Lou, her body demands more oxygen. The fact that she is trying to grow so fast: that requires more oxygen. Every time they adjust the oxygen input, her body has to acclimatize to the change. And while it is acclimatizing, the percentages of oxygen in the blood can fall. --Kind of like what happens to people who normally live at sea level and then come to visit Denver (at 5,300 ft above sea level). The air is relatively thin(ner) here, and their bodies need time to adjust. They find they are winded easily. They may suffer headaches. They need extra fluids.

So it is for micro-preemies like Gracie Lou. Their bodies need time to adjust.

And so it was with Gracie Lou. After a few minutes, her blood oxygen levels slowly rose to normal (or near-normal, anyway!).

At some point, after the rearranging had been going on for some time, I noticed Gracie Lou's left ear seemed rather deformed:

"What's going on with her ear?" I asked.

"Oh, at this stage, babies' ears lack the cartilage to hold their structure," said Maegan. And she gently flapped the ear back in place:

Ahh! Much better!

Then it was time to put in some Momma scent cloths--cloths that Momma has kept close to her body "simply" to absorb her scent so Baby Gracie Lou can enjoy the fragrance. . . .

"Oh! Look at that! She has opened her eyes!"

One of my readers encouraged us to check out Kangaroo Mother Care--a "method" by which newborns are given maximal skin-to-skin contact with their mothers (and fathers!) pretty much from the moment of birth. Mentioning this kind of information and opportunity (much less pushing for it) can become highly emotional and controversial in the midst of ongoing medical care.

Despite the risks, I thought I would broach the topic gently with Jonelle: "Have you heard of Kangaroo . . . ?"

I didn't even get the question out, and Jonelle said, "'Kangaroo Care'? Yes! We are planning to do that the moment they take the second line out of her belly."

"You mean the hospital is aware of Kangaroo Care?"

"Yes! . . ."

We asked the staff when Gracie Lou would get the line out of her belly.

"Probably next week," said our contact. "Y'know, we have it in her primarily so she doesn't have to be poked so much to get blood samples. . . . She probably had five or six samples drawn today. And that's a lot of poking!"

Without the benefit of full body-to-body skin contact, we have been left with the next best option: as much gentle holding as possible. And so it was time for Jonelle to get her hands on the little one:

Items for prayer:

• That Gracie Lou's lungs will continue to strengthen.
   
• That the nursing staff will be able to continue to wean her off of the oxygen and the nitric oxide (used for vasodilation) that they have been feeding her in order to keep her blood gases properly balanced.

At this time, we were told, these really are the two key points for prayer.

Thank you!