Thursday, May 22, 2008

So You Know What’s Been Happening … but How Are We Doing?

I've been describing events that have been happening, but haven't said much about how the family is doing. (I should say up front that this is my take on things; Laurie may have a different perspective.)

We are coping best we can with all that has happened since the beginning of the month but it is challenging as you might imagine. So much to absorb—like a truck ran over you and then backed up and the driver (who looks strangely like Nelson Muntz from The Simpsons) said "HA! HA!" and did it again.

We're adjusting to life with two children as best we can. Brady is also adjusting to life with a sibling; overall I think he's doing okay. I think about what it would be like if he had two sisters right now. Both parents would be holding a twin and there would be no lap for him to climb up in. He would really feel left out. So are there small silver linings in the dark cloud that has enveloped our life these past few weeks? Maybe... but I would give anything not to be stumbling around in the dark abyss of grief right now searching for any kind of light.

As you can imagine, Laurie is quite exhausted after this ordeal. She went through major surgery to deliver the girls via Caesarian Section and had virtually no recovery time before having to leave the hospital to deal with Hope's death. There was obviously very little time to relax in the week leading up to the funeral. On top of all that, women typically get baby blues a couple weeks after delivery anyway which can make you feel down, and it is compounded by her grief over Hope. And then she has to be up every night nursing Becca, which is always hard and makes her physically exhausted. She is acutely aware of how little time she has for herself while caring for two children—I certainly relate to that. What she would love is just some time to be by herself so she can breathe and start to process what just happened to us—I relate to this too. She just hasn't had much time to do that these past couple weeks and she is struggling because of it. We've gone from one thing to the next and now the funeral is behind us, but we still have two children to deal with day after day. There's just no time to grieve; and yet we have to make time for it…

I am also tired out from everything that has transpired and because I'm tired, I have very little patience for the "perfectly normal" behavior of a 2-year old right now. It just seems like every action we try and get Brady to do is contested—e.g., bedtime takes forever it seems. I just wish he would be a little more obedient right now. He's testing us and seeing what we will tolerate, etc—typical for a 2-year old. He's been hitting and slapping—no doubt learned at daycare from other kids—and we're definitely trying to nip that in the bud. We've been using time out to discipline him but sometimes he thinks it is fun to go to timeout and thinks it is more like a joke. Sometimes you are trying to discipline him and having to keep from cracking up laughing at what he does.

I think I just need an extra dose of patience right now. I have to keep in mind that he's adjusting to life with Becca and he can also sense our stress over a new baby and the loss of our daughter. He doesn't fully understand what happened but he knows mommy and daddy are not "normal" right now. He may be acting out a bit to get our attention and regressing in places as is typical for toddlers adjusting to a new sibling. My rational brain knows all this and tries to keep it in mind, but sometimes when I am in the middle of things, when I'm at my wits end trying to get Brady to listen and do what he needs to do, I start to lose my cool and take it out on the kids, and this is what I need to avoid.

I went back to work this week—there wasn't really much choice to take off any longer. As far as I am concerned, my company didn't really do well by me in this situation. They gave me three days Bereavement Leave and zero days Paternity Leave, which basically means I had to burn through all my Universal Leave (which combines Vacation and Sick into one pool) and take some Leave Without Pay through Family and Medical Leave Act so that I could take the last two weeks and two days off—the first week being consumed with funeral preparations and the second being for the sake of our families mental health.

I don't mean to vent against my company. Actually, I think my company has done well by me, and has decent benefits, but I don't feel they responded well in this particular unique circumstance. I think what was frustrating was that it came across as kind of cold and heartless. Upper management just said: "Sorry for your loss; we sympathize, but rules are rules." There didn't seem to be any flexibility to react to a specific unique circumstance that an employee faced. They seemed to think only of their bottom line—i.e., I think Bereavement is charged directly to the company, not the government customer so in their mind, three days was more than generous.

I don't want to seem ungrateful. I truly appreciate the three days they gave me for Bereavement, I really do. I just didn't feel like it was enough. My company can take solace in the fact that what they did was "comparable to what other companies do" if they wish, but I feel that "what other companies do" is not really the point in this situation, it's more "what is the right thing to do for your employee?" The fact I couldn't even have a week to grieve my daughter's death without having to think about how it impacts my Universal Leave balance added more stress to my life and made an already impossibly difficult situation even worse.

So the bottom line is that I have next to no leave left for summer vacation—which we need more than ever right about now. I'll manage to take some days this summer (I can go negative and make up the time if I need to) but I feel like the company had the ability to help me more than they did, and chose not to. I'd like to think I deserved a bit more consideration after seven years working for this contract—two different companies have had it since I started.

So overall how are we doing? I'd say we are coping the best we can given what we have been though. We certainly are people of faith and we lean on God to keep going forward, but the trouble is that you have trouble reconciling the events of the past couple weeks with a loving God and there are times when you are tempted to blame God for what has happened. So the very person you need to cling to, you feel anger towards. It's normal to feel this way given what we've gone through, but it makes you feel conflicted within. You know in your head the theological argument that God does not cause suffering. We know all the textbook answers: God is not sitting up there dreaming up ways to make our lives difficult; God loves us more than we can imagine; God is working for the good of those who love us. But then you ask God: Okay, if you love us so much, why did you allow us to go through all this hell? If God is all powerful and working for the good of those who love him, why didn't he protect us from having to go through all this?

The irony is that when Laurie and I started this whole process to have a second child, all we wanted was one sibling for Brady, and at the end of the whole journey, that is what we ended up with. But if two children was what was supposed to be the "end result", then why did the road have to involve miscarriage and losing a twin? I know we might never know the answer, but you can't help but ask the question. It has been said that, "Hardship trains us;" if that's true, I must be in boot camp right now. Maybe some day the "why this was all necessary" will make sense, or perhaps it prepares me for something that is coming down the road that simply having a second child with no complications would not have done. I have to believe it not all just "random crappy stuff" dreamed up by a capricious God to make my life a living hell. Yet sometimes, you waiver in just how sure you are about that...



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Thursday, May 15, 2008

Adjusting to Life with Two Children





Events from Tuesday May 13

The first few nights home Becca had slept quite well, and seemed content to nurse late at night, once during the night, and then early in the morning. This was very nice as we were going through the viewing and funeral late last week. The last couple nights, though, she had needed to have a bottle of formula during the night. (Brady ended up needing a mix of formula and breast milk particularly at night because Laurie's supply seemed inadequate at times.) Laurie was feeling a bit frustrated that she was having supply issues again, but the she spoke with a lactatian consultant at Franklin Square who said it is normal to have ones supply of milk dwindle at night, especially when you are under the kind of stress we have been under. Frankly, I think Laurie has done remarkably well at nursing consider all we have had to go through since the girls were born. One normally does not have to deal with all we've had to deal with when one has a newborn baby.

Overall, Becca seems to be adjusting pretty well to life at home. She seems to have stayed healthy despite the fact that everyone else in the house (me, Laurie, Laurie's mom, and Brady) are struggling with coughs and colds. I have heard her sneeze a bit but I'm hoping she will continue to avoid getting sick.

Meanwhile, her parents adjust to having an infant again, and the sleep deprivation that comes with a new baby. Hopefully, it will only last a few months and we can survive it but it seems like a long time when you are in the middle of it. (Of course, Brady started teething very early so no sooner had he started sleeping through the night than he was up all night with teething pain; here's hoping Becca is a little less anxious to start eating solid food—but she is a Ward after all. ☺

Brady is still trying to figure out what to make of his little sister. Overall, I think he's doing quite well. Sometimes he strokes her head gently and says: "I pet her." And he is clearly interested in his sister and knowing where she is, but at the same time, he clearly gets a little jealous when mom or dad holds Becca and not him. He wants to get up on our lap at the same time. He sometimes does things he knows he shouldn't just to get attention from his parents. His reaction is probably fairly typical for a 2-year old adjusting to the shocking reality that he now has to share his parents with another sibling. I think in the long run, his adjustment will be easier than a sibling that lives much longer as an only child—for example my brother had 6.5 years before I came along and I think it was really difficult for him to adjust to my presence.

We had a fairly relaxing day today, which we need right now. It was a bright sunny spring day following yesterday's rain. We took Brady over to daycare around mid-day so we could run some errands and Laurie's mom didn't have to try and take care of him. I got a chance to take a walk in the late afternoon and just think about all that we've lived through the past 10 days or so. Who knew when this month began that all this would happen? I would say that only God knew. We are coping the best we can with this completely unexpected turn of events, but it has been and continues to be a difficult journey. Our family just needs time to be together and regroup and figure out what "normal" means in the aftermath of all this.





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Taking Down Hope’s Crib…but the memories linger

Events from Monday May 12

We woke up to a genuine late-season Noreaster this morning—stared yesterday afternoon. If this were winter, we'd be talking about historic snow, but alas the cool wet pattern waited until May as it has done many years recently. DOH! We've had several inches of rain and strong gusty winds. There was flooding and trees down around the area. Schools were delayed or closed because of the weather.

I have decided that my family and I need at least another week before I go back to work. So I will take a week or so of Leave Without Pay via Family and Medical Leave Act—since I have used up my vacation now as I discussed previously I really have no other option unless I want to go way into leave deficit that would take forever to get out of.

My parents came up and visited today and bought carryout food from the Boulevard Diner—a place Laurie and I have frequented over the years. While they were here, my dad and I disassembled Hope's crib and stored it in the basement. It was hard to do this, but necessary… and now seems like the right time to do it. We will need to use the nursery and we don't need to see the crib every time we walk in the room. Of course taking the crib down does not erase the memory of what we were planning for these nine months. I can still see the tack mark on the all where the little wreath that was made for Hope was hanging—Janet Menke threw a baby shower for Laurie and she had made a wreath for both Becca and Hope that we had hung in the nursery. Becca's wreath continues to hang in the room. Not only that, but we had chosen Noah's Ark as the nursery theme and so the decorations are all pairs of animals, which can't help but remind you that we were planning on twins.

And even if you could get rid of all physical evidence that we were planning for twins, the emotional impact of the past nine months would still be there. Laurie and I wrestled with the reality that we were going to have two more children and made the necessary preparations over that last few months. Now, we must readjust to the reality that we will only have one more child to raise. The irony is that when this journey began, we simply wanted a sibling for Brady and we worried when we found out we were having twins that two more children would be overwhelming. But that does not mean we didn't want our daughters. The sadness we feel at the loss of Hope testifies to our true feelings. We would give anything to have the challenge of taking care of two healthy infant daughters right now!

The fact is we worked very hard to prepare for the twins and welcome them into our lives and we're now shocked that we won't get the chance to raise them and still trying to figure out what happened and why. We will probably never understand why it was necessary to go through all we went through—a miscarriage last year followed by losing a baby this time around—if the end result was going to be just one child. Maybe it will make sense one day. Maybe this road we traveled will help someone else in the future. But right now we just don't know. I think it's best to avoid too many "why" questions right now. They just drive you crazy as you try and figure out how to pick up the pieces and move on.



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Sunday, May 11, 2008

A Restful Mother’s Day

Events from Sunday May 11

Laurie and I elected not to go to church today. We were just too tired out from the events of the past week. For Mother's Day I cooked some chicken breasts on the grill and we had some macoroni and potato salad that Beverly DeFontes had been nice enough to fix for us, as well as deviled eggs provided by my sister-in-law Patty. As you might imagine, all of us, including Laurie's mom, are very tired after everything that has happened this week. It is good to have a day where we don't go anywhere or do anything. Laurie and I need some time to rest and recoup and start to process all that has just happened to us. The day has a strange quality as we are thankful that we have Brady and Becca with us, but we also feel sorrow that we will never get the chance to know our daughter Hope.



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Words for Hope’s Funeral

Events from Satruday May 10

These were words I spoke at Hope's Funeral Today

On our wedding day some of you may remember that my vows to Laurie included a scripture from the first chapter of Joshua:

Have I not commanded you? Be strong and courageous. Do not be terrified; do not be discouraged, for the LORD your God will be with you wherever you go.Joshua 1:9

I could not have possibly known then just how important it would be for Laurie and I to keep these words before us these past five years (almost). We've lived through Hurricane Isabel, temporary exile in Glen Burnie while the parsonage was remodeled, fertility struggles, pregnancies, miscarriages, and so many other smaller struggles that are part of daily life.

By God's grace we have survived and even thrived amongst the trials and hardships. I feel as if the cord of three strands between God and the two of us that I spoke of on our wedding day grows stronger day-by-day. Difficult times force us to our knees; they make us rely on God more than ever, and they make us lean on each other for support. That has certainly been true for us in the past and it is definitely true today as we gather to do the unthinkable—bury our infant daughter Hope Marie.

The arrival of our twin girls and the subsequent loss of Hope has been like nothing we've ever experienced and I pray we never experience anything like it ever again. But I have to say that through all that has happened this week I have felt a sense of God with us.

• with us as we delivered our girls a week ago Friday;
• with us as the news about Hope got progressively worse during the day Friday and she was transferred to Johns Hopkins;
• with us as we sat with Becca in the NICU at Franklin Square last weekend and as she nursed for the first time;
• with us on Saturday as the doctors at Hopkins gave Laurie's mom and me the terrible news about Hope's condition—there was really no hope for our Hope;
• with us on Saturday as I had to break the news to Laurie who was still lying in a hospital bed recovering from her C-section;
• with us on Sunday as we had to go to Hopkins to baptize and say goodbye to Hope;
• with us as we went to Duda Rucks Funeral Home on Tuesday to plan Hope's funeral;
• with us as we bought Becca home from the hospital on Wednesday;
• with us at the viewing last night; and now
• with us today as we lay our darling Hope to rest.

Through all the emotional whiplash of the past eight days, I truly believe God has been with us!

Laurie and I truly feel that the prayers that have been lifted up on our behalf have carried us through these excruciatingly difficult days and will continue to sustain us in the days to come. We are also thankful to be part of a church family that can offer love and support and where there are people who have walked through the very same valley of the shadow of death of losing a child that we now walk. We will especially need you all in the days ahead. We will also need everyone's help to surround Brady and Becca with love and help them through this confusing time.

We got a delivery from the NICU at Hopkins Thursday afternoon that contained a little belongings box for Hope. We went through the box together with tears. They sent a nice card signed by a number of the NICU staff and also included pictures of Hope and other things that were with her when she was in the NICU at Hopkins—a cross, an angel, blankets, her outfit, etc. The card they included with the box said:

When someone comes into our lives…
And they are too quietly and quickly gone,
They leave footprints on our hearts…
And their memory stays with us forever.

I liked the sentiment very much; it seems true of our darling Hope. Even in the brief time she was with us, Hope Marie Ward certainly left footprints on the lives on quite a number of people. I pray that her memory will indeed stay with us forever.

Every time we look at your sister Rebecca May, we will have a living reminder of your beauty and we will see your reflection shining through in your identical twin sister. There will always be a special place in our hearts for you. We love you Hope Marie and we commend you to God's arms this day but we also vow that we will never forget you. We will always hold on to Hope!



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Hope's Funeral

Events from Saturday May 10

The day was cool and rainy, almost as if tears were falling from heaven. Laurie and I went over to Duda Rucks this morning to deliver some items to place in Hope's casket. While we were there, Laurie decided that she did want to see Hope's body one last time. They did a nice job with her; it almost looked like she was asleep. We took a few minutes with her and said a prayer before we left. I'm glad we decided to open the casket one last time. Last night was not the right time, but somehow, this morning it seemed the right thing to do.

The funeral service took place at Lodge Forest UMC. I carried her casket into the church from the hearse. Rev, Tony Hunt, Laurie's District Superintendent, gave the message. Tony had lost his 18-year old son a little over two years ago, so he seemed a good choice. Revs. Sandy Taylor, Ann Atkins, and Ann Adams, colleagues of Lauries, also participated in the service. In addition, Pastpr Patsy Fratanduano from Cedar Ridge Community Church took part. Phil Lazo, a friend of ours that lost his 8-year old daughter a few years back, sang two songs. The Lodge Forest Praise Band sang a couple of songs. People had an opportunity to share some words of comfort. I shared something that I had written—see below. Overall, the service was very nicely done.

There was a luncheon at Lodge Forest following the service. The folks at church did a nice job with lunch. If there is one thing that Methodists do well, it's putting together pot luck meals, and the people at Lodge Forest are very good when it comes to supporting people during times of loss.

Four of Laurie's six brothers were present today. Her brother John had to have heart surgery on Friday, and could not be present. Her brother Richard was attending the baptism of his granddaughter that was scheduled for this day long before the funeral had to be planned. Laurie's sister Wendy was also there, as was my brother John and his family. Many of our other friends came out to support us including a number of Laurie's pastoral colleagues. Steve Audi and Beverly DeFontes, who were best man and maid of honor at our wedding were there to stand with us today as we buried our daughter. Can you ask for better friends? They have been there to celebrate with us and also to mourn with us. To Bev and Steve, you will never know how much your presence has meant this past week. Thanks for being there!

After lunch, Laurie and I (along with Brady, Becca, Wendy, and Laurie's parents) went by limo to Miranda Cemetery in Calvert County where Hope was buried. The cemetery is associated with Huntingtown UMC, where my parents worship and where Laurie and I were married almost five years ago. Laurie and I bought a plot for ourselves and Hope can be laid to rest between the two of us—not something we had thought about prior to this week. The burial plot my father selected for us is very nice, located under trees near the wood edge.

Sandy Taylor, Ann Atkins, Ann Adams, and Rev. Patricia Siebrig from Huntingtown took part in the graveside service. Some family and friends who did not come up for the funeral, were present for the burial. Several of my father's friends were also at the burial.

Once the service was over, we made a brief stop at the parsonage of Huntingtown UMC so that Laurie could nurse Becca, and then we traveled back to Edgemere. We ate some of the leftovers from this afternoon's luncheon for dinner and then turned in for the night.



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Saturday, May 10, 2008

Hope’s Viewing

Events from Friday May 9

Today was the day for Hope's viewing. Brady went to daycare today; there was no need for him to go to this part; he will go to the funeral tomorrow. We took Becca with us to the funeral. Since Laurie is nursing, she really needs to go with us, but it was also good to have her present. She is the shining beacon in this dark valley and people got a chance to both mourn Hope's loss and get a sneak peak at our new arrival. For the most part, we only let family hold Becca today. There will be plenty of chances for people to hold her later, when she is a little older and not as vulnerable to getting sick.

We took the morning to relax—as much as one can in this kind of situation. There were still some final plans to confirm for today and tomorrow.

At 2 PM we went to Duda Ruck's Funeral Home for the viewing. The immediately family gathered an hour ahead of afternoon viewing, which ran from 3-5 PM. Laurie's mom, my mom and dad, my brother and sister-in-law and my two nieces were there to support us.

There was a decent turnout for the afternoon viewing. Quite a few were there from Lodge Forest UMC where Laurie serves as pastor, as well as a number of Laurie's pastoral colleagues. Two of my colleagues from work also visited, which was very nice of them. Thanks Debbi and Maura! It meant a lot to see you all. Sharon, one of the nurses from the NICU at Franklin Square, came and she held Becca for a while to free us up. She wasn't family, but we figure after caring for Hope and Becca (and Brady two years ago!) she earned the right to hold our daughter during this difficult time.

For the most part, people respected our desire not to have too many flowers at the funeral home. We had a few very nice arrangements in the room, but not too many. Dundalk Florist did a nice job decorating the casket with beautiful and fragrant flowers per our request. I like to think of them as the lingering fragrance Hope's life has left on our lives, but at the same time I realize that no amount of flowers and fragrance make this situation pleasant or pretty. We're dealing with our infant daughter's death here; it's about the worse situation you can imagine.

Between the afternoon and evening viewing, we came home briefly. We had to pick Brady up from daycare and grab a quick dinner before heading back over to the funeral home. Brady is getting a little short-changed on attention from Mom and Dad right now, but hopefully when these days are behind us, we can spend some more focused time with our son.

The evening session probably had a bit smaller crowd than the afternoon viewing. More members of Lodge Forest visited, as did several more of Laurie's colleagues, and three of the guys from my men's group from Cedar Ridge. It was good to be surrounded by family and friends today but by the end of the evening I feel tired. For an introvert, this kind of situation is something of a nightmare. Every visitor wants to hug you, which I need right now, but at the same time it's hard for me to be the center of attention. I certainly would give anything to not be the center of attention for this reason tonight.

After everyone left, Laurie and I had a few minutes alone with Hope before we headed home to put Brady to bed and put ourselves to bed. We have another busy day tomorrow with the funeral and burial. The journey is difficult but I feel God keeps giving us what we need to get through each day.



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Thursday, May 8, 2008

Funeral Preparations

Events from Thursday May 8

We're back home this afternoon doing errands that need to get done before tomorrow's viewing. They are necessary, but they are difficult. It just seems wrong to bring our daughter home from the hospital one day and then make funeral preparations for our other daughter the next day. As I said before, the world seems out of alignment, but it seems this is the reality we are dealing with and so we do the best we can by God's grace…

We had to decide on what outfit to bury Hope in—even though the casket will NOT be open. (We have made sure to remind the funeral director about this. No need to have an infant seen like that! We said goodbye to her body on Sunday.) Laurie decided to bury Hope in the outfit she had originally intended to dress her in when she came home from the hospital—and the same one her sister did wear yesterday. Perhaps it is fitting that Hope will go home (to Jesus) in the same outfit that her sister came home in.

We also got a delivery from the NICU at Hopkins that contained the little belongings box for Hope. We went through the box with tears—mostly mom but it wasn't easy for dad either. They sent a nice card signed by a number of the NICU staff and also included pictures of Hope and other things that were with her when she was in the NICU at Hopkins—a cross, an angel, blankets, her outfit, etc. The card they sent said:

When someone comes into our lives…
And they are too quietly and quickly gone,
They leave footprints on our hearts…
And their memory stays with us forever.

I liked the sentiment very much; it seems true of our darling Hope. Even in the brief time she was with us, Hope Marie Ward certainly touched many lives and made an impact on quite a number of people. I pray that her memory will indeed stay with us forever.



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Brady Returns to Daycare… Becca and Mom Visit the Doctor

Events from Thursday May 8

Brady went to daycare today. It was his first day back since our odyssey began almost a week ago. Who could've guessed things would play out the way they have the past week? Anyway, it was nice for Brady to get back to see his friends at daycare and it frees us up to do what needs to be done today, but Laurie and I miss having him with us. He's needing lots of mom and dad time right now as he adjusts to the fact that he now has a little sister. So far he has not asked to, "take her back," but I hear many older siblings have that reaction as they start realizing they now have a rival for mom and dad's affection—at least in their 2-year old mind.

Becca had her first visit to our pediatrician today. She got a good report. She's long at 20.5 inches—not surprising given her parents are both tall and her brother seems to be taller than average. She weighs in at 5 lbs, 13 oz, which is down some from her birthweight of 6 lbs, 6 oz, but it's not unusual to lose some weight early on. Dr. Fertsch also commented that she will probably have a large head. We're a "big headed" family I guess since my noggen is pretty good-sized and so is Brady's.

We also went to Laurie's ob/gyn to get the staples removed from Laurie's abdomen. The physical scars are healing pretty well, but the physical scars, while not trivial, are minor compared to the mental and emotional anguish of this past week. Those scars will take much longer to heal and may linger for the rest of our life in some form or fashion.
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A Brief Respite

Events from Wednesday May 7

Today was a somewhat less hectic day. Once we got home from the hospital, we didn't really have any more appointments all day. In the afternoon we had lunch and then took some time to relax. Laurie was able to spend some quality bonding time with Becca, which was good for both mom and daughter. I was able to just plain take it easy for a while, which I badly needed. I had a chance to check e-mail and so forth.

I found out that my company will only grant me three days leave for Bereavement. This sucks and I don't think it's really fair. Apparently three days is "standard company policy" and "consistent with what other companies offer." I don't really care about all that right now; I think they need show a bit of compassion for a grieving father and consider that I am in fact burying my daughter this weekend and at least give me a week off for bereavement. We get hosed as fathers to begin with because the company won't grant any paternity leave, and then you have something happen like what has happened to us and they add insult to injury by not being willing to give any extra time off. I asked my supervisor if it was possible to get a couple extra days for Berreavement, but alas the answer is, "No". It kind of seems like people don't matter in these moments; the policy is what it is and doesn't get changed. In their mind I should be done grieving by tomorrow morning; after that it's the same as if I were on vacation at the beach or something. This means I have to burn through my Universal Time Off—the same leave I would need to take a vacation—which is already limited from all the time I've used for various doctor's appointments and so forth during pregnancy.

Laurie's mom made us dinner—meatloaf and mashed potatoes. Simple comfort food is good right about now. Laurie's friend Beverly (who was with us on Sunday when we said goodbye to Hope) came to visit us and got a chance to see Becca. I was completely exhausted this evening. I supposed the stress of the past week is starting to catch up to me and I finally had a chance to stop long enough to crash and burn.



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Wednesday, May 7, 2008

Becca is Home!

Events from Wednesday May 7

After spending her first five days in the NICU at Franklin Square, we got the call late this morning that we've waited for since this whole ordeal started. We found out our daughter Becca was clear to go home. Her jaundice is now down to low enough levels that she can be discharged. DRAT! I never got a picture of her in the little glowworm outfit. ☺

Laurie, Brady, Grandma Gates, and I went to Franklin Square for what we hope is the last time in a while and we fed Becca and she was discharged. We came home and had lunch and we are actually resting this afternoon. There are some very rough days ahead as we get ready to bury Hope and we need our strength for what is coming up.



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Funeral Arrangements for Hope

The plans for Hope's funeral are now set…

There are several opportunities for those who might be interested.

There will be a viewing at Duda-Rucks Funeral Home in Dundalk, MD (7922 Wise Avenue, Baltimore, MD 21222) on Friday May 9 from 3-5 PM and 7-9 PM.

The funeral service will be at Lodge Forest UMC in Edgemere, MD (2715 Lodge Forest Drive, Baltimore, MD  21219) on Saturday May 10 at 11 AM.  A luncheon will follow after the service.

We will bury Hope at Huntingtown UMC in Huntingtown, MD in Calvert County—where our family has burial plots.  The interment is planned for 3 PM Saturday.  Close friends and family will go, but anyone is welcome who wishes to come.

In lieu of flowers, donations can be made to Lodge Forest United Methodist Church.



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Emotional Whiplash

Events from Tuesday May 6

This morning I actually woke up and went to the gym—what I normally do on a Tuesday morning. It felt good to do something, anything, that seemed remotely normal or routine right now. I think I am geared so that when things like this happen, I want to find my way back to some kind of routine as quickly as possible, but I realize that this kind of grief will defy timetables and schedules. We have to let it be what it is… and accept that what it is for me will be different than what it is for others… and that's okay.

After breakfast, Laurie and I faced the difficult task of going to Duda-Rucks Funeral Home to plan our daughter's funeral. There just seems to be something out of whack with the cosmos when parents have to bury their infant daughter. I keep hoping I might wake up from a bad dream, but unfortunately it seems all too real. Probably the hardest thing was seeing the tiny casket in which she will be buried. We knew we needed to see it, but it was hard.

Once we finished at the funeral home, we went to Franklin Square to see Becca. What a welcome sight to gaze upon her beautiful face after having to sit in that place where the stinch of death permeates the place and plan her sister's funeral. But it certainly does feel like emotional whiplash— from the anguish of seeing Hope's casket to the joy and comfort of holding Becca in our arms. I really feel like having her here softens the blow somewhat from what this would feel like if we lost a child and did not have another child. Laurie nursed Becca while we were there and she ate well.

Unfortunately, Becca has a bit of jaundice so she can't come home today. They have her under UV light and in a little jumpsuit to protect her. Laurie commented that she looks like a "little glowworm". ☺ The good news is the EKG they did yesterday came back normal. We can use some good news right now! Hopefully, the jaundice will clear up and she can come home tomorrow. We certainly want to get her home so we can stop shuttling back and forth to Franklin Square a couple times a day, but at the same time we might as well wait until she is ready so we don't end up having to bring her back. As one nurse put it: "Look at it as 24-hour babysitting." Soon enough we will be dealing with having an infant at home on top of our 2-year old and everything else that is going on.

After we finished at the hospital, we went home and had lunch. We had a visit from Laurie's District Superintendent Tony Hunt and from another friend. All the while the phone kept ringing with various people on the other end. There are so many details that need to be tended to right now. It can be overwhelming. Laurie and I spent some time planning the funeral service—i.e., music, scripture, etc. In some ways we shouldn't have to do this, but in others it's good to do because it lets us make the service more personal and meaningful to us and appropriate to honor Hope. It's hard for Laurie not to want to help plan the service since she is a pastor and it's "what I do".

We went back to Franklin Square in the late afternoon and Grandma Gates watched Brady—but it was clear that he didn't want mom and dad to leave again. We fed Becca again, but this time she wasn't has receptive to nursing. They gave her a bottle of milk mixed with iron supplements and we suspect that she got a little spoiled and didn't want to have to work to get milk from Laurie's breast. We ended up giving her a bit more milk from the bottle. Hopefully, next time she'll be more receptive. The lesson learned may be—don't offer the bottle first.

On our way home we picked up fast food from Dairy Queen and headed home to spend a little time with Brady before he had to go to bed. We know he's getting short-changed a bit on time with mom and dad right now but there's just so much to get done with having to care for Becca and plan a funeral. You're just not supposed to welcome an infant home and have a funeral for an infant in the same week! We just keep pushing forward doing the best we can, but life has a surreal quality right now. You make it through day-by-day even moment-by-moment and feel support to keep pushing forward coming from a source beyond yourself. Sometimes you just feel like you've been run over by a truck, and then it backed up and ran over you again, and again, … I think it will help to get through Friday and Saturday, but in other ways this pain will be with us the rest of our lives.
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Brady Meets Becca

Events from Monday May 5

As planned, on Monday evening Wendy and Michael bought Brady back home and we had dinner from Panera Bread courtesy of one of Laurie's friends and colleagues. After that, Wendy, Laurie, Brady, and I went up to Franklin Square to visit Becca in the NICU. Brady got to meet his new sister for the first time. He was definitely curious about the little creature in the bassinet. He got up on a little step stool and kept peering over the side of the plastic guard to try and get a better look at Becca. He said, "Hi Becca." I wonder if he is at all curious where the other one is? (We had been telling him throughout that he would have two sisters and he had been saying "Hope" and "Becca" on occasion.) If he was curious, he did not say anything which was probably a small blessing given the raw emotions right now.

Next Laurie picked up Becca so she could breastfeed. That got Brady a little more worked up, but I picked him up and put him in my lap and that seemed to make him happier. After a few minutes, we were reminded why 2-year olds aren't generally welcome in the NICU. Brady started playing with the privacy curtain around us and running around the NICU, so I took him out in the hall of the main hospital for a while so Laurie could finish. Brady and I also went in the Meditation Chapel at the hospital.

We went back home and it was time for Brady to go to bed. He seemed pretty tired out after his four days being entertained by Aunt Wendy, Uncle Michael, and his two cousins, Allison (11), and Melissa (9). They all seemed to enjoy having Brady around for the weekend.



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Monday, May 5, 2008

A Better Day Dawns...

This morning we woke up early—we had turned in pretty early last night, so we were able to get over to Franklin Square's NICU and see Becca and mom was able to breastfeed. It was very nice to spend some time with our daughter.  There is no question that having Becca (and our 2-year old Brady who returns from staying with Aunt Wendy tonight) softens the blow of losing Hope.  As difficult as this has been for Laurie and me, it's hard for us to imagine what it would be like to go through this kind of loss without other children to focus on.  We have two children that need their mom and dad and they are our motivation to keep going. We have to help them understand that their sister is with Jesus and hold on to her memory. 

We were able to spend a few hours in a Parents Room at the NICU.  They wheeled Becca in and there was a bed for Laurie (just a couple days removed from major surgery) to lay down, which was great.  It was a wonderful time for mom and dad to bond with their daughter.  Mom in particular got to spend some much needed time with Becca. Laurie commented that Becca seemed as content as she has been since she was born—I'm sure that's true since she is with mom and dad. 

Earlier this morning, the doctor in the NICU detected that Becca had a heart murmur.  Such a condition is not uncommon for infants, and we do have a family history of heart issues (Laurie has one).  So Becca had an EKG done.  They wheeled her out to do the exam, but our daughter apparently was hungry because they only got halfway through the exam before Becca started crying.  Michelle (the NICU nurse) bought her back and mom was able to breastfeed again (and dad was able to work on his journal, which is some of what you are reading now.)  They will finish the EKG later.

At around midday we went home and Laurie's friend Donna Herritt visited and bought us lunch. After lunch, we were able to rest.  Mom was able to pump and her milk supply seems to be coming in—this will make Becca happy. ☺

Plans are for Brady to return home this evening with Aunt Wendy and family and for us to go out to Franklin Square to see Becca so mom gets another chance to nurse and Brady gets to meet his new sister.  Juxtaposed around these happy events will be planning for Hope's funeral.  At this point it looks like we might do it Saturday at Lodge Forest UMC but plans are still TBD.
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Saying Goodbye to Our Hope… but hanging on to hope

Events from Sunday May 4

Laurie and I didn't sleep much Saturday night. Not only do we have the emotional roller coaster of the past two days but Laurie is recovering from her C-section and still in considerable pain, and I seem to have come down with a bad cold. It came on fast. I started coughing a bit on Saturday afternoon, but by evening I was much worse. In fact, I went to the Emergency Room to be checked out and they said I do in fact have bronchitis—when it rains it pours.

In the morning, Laurie and I went to the NICU at Franklin Square to visit with Becca. This was Laurie's first opportunity to breast feed Becca. Meanwhile, I took care of errands including getting our room packed so Laurie can be discharged later today and we can go down to Johns Hopkins to say goodbye to Hope. Reverend Sandy Taylor (who mentored Laurie) will come and baptize Hope and then we will disconnect Hope from life support.

Tony Hunt (Laurie's superintendent) came to visit Laurie. He prayed for us before he left. There is a delay in discharge because it was decided that Laurie should have an ultrasound of her leg to make sure that there are no blood clots—Laurie had lots of swelling in her feet and some pains so they decided better safe than sorry.

We went to Hopkins to have a last opportunity to visit with our daughter. We've decided that her chances for a decent quality of life are not very high and the best thing to do is let her go. Laurie was able to see the brain scan results that I saw yesterday and that helped her, I think. We took some time to visit with Hope and then Sandy baptized her. (The staff cleared out the area while we were there.) After that they disconnected most of the tubes that she was connected to and mom and dad got a chance to be alone and hold her while Laurie's parents, my dad, Beverly DeFontes (a close friend of Laurie's), and some of the staff went to another room.

Laurie and I held Hope until Hope's heart stopped—it took a little while since she had been on strong medications to keep her heart beating. After the doctor confirmed her heart had stopped, we spent a little more time with her, and then we rejoined the family and gave the others a chance to hold Hope one last time. I have to commend my dad. He's not extremely comfortable in situations like this and there may have been times in the past where he was less than compassionate, but he impressed me with how he "stepped up" in this situation and was there for his son at a time that I really needed him. Thanks dad! I know it wasn't easy but I'm thankful you were there.

I also have to commend the staff at Hopkins. They could not have been more caring and compassionate in dealing with us. Even the doctor gave us all hugs, which really stands out as somewhat unusual. Several of the nurses asked to stand in for the baptism and we heard from Sandy that they were impressed with how our family handled this very difficult situation. (They will do an autopsy on Hope to see if they can learn more about what exactly caused the brain damage and then send her body to a local funeral home.)

Once we finished, Laurie and I went with her mom and dad for dinner and then we all went home. Laurie and I were exhausted and we turned in very early. The stress of the past couple of days caught up to us. It was an extremely difficult day and it is very hard to say goodbye to our infant daughter but we rejoice that Hope is at peace, and free; she passed from life support to life eternal and we rejoice for her even as we mourn her loss. We will never forget our little girl; we will always hold onto hope.



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Hope is Fading

Events From Saturday May 3

Grandma Gates and I went to the NICU at Johns Hopkins where we got to see Hope and speak with the doctors—they had called us late last night and requested we meet with them. It was tough to see Hope hooked up to all those tubes. It's remarkable; she is beautiful on the outside and as identical to her sister but I begin to realize that it's just a shell. You'll see what I mean when as you read this post…

The doctors gathered me and Grandma Gates into a small conference room and gave me more details about what they told us on the phone last night. The doctors at Hopkins did a brain scan to see if the trauma of Hope's birth had caused any damage to her brain. This would be a routine thing to do with a baby having the breathing difficulties that Hope was. What they found "shocked" them. There are large portions of Hope's Brain that are "missing"—watery cists where brain cells have died that are clearly evident on the ultrasound photo even to an untrained person. The doctors believe this damage to her brain was done some time during the pregnancy—i.e., it's older damage that was not caused by the ordeal she went through at birth. (We were monitored extensively during pregnancy and there was never any indication that there was a problem; every checkup they told us: "Everything looks fine.") The doctors pretty much told us that brain damage this extensive would likely mean very little if any quality of life for Hope. She very likely wouldn't survive very long if at all.

The doctors said that this is about the worse news that they could have to give a parent. The heart-wrenching choice we now have to make is whether move from the mode of doing all we can to keep her alive to making her comfortable. WOW! It's really hard to receive this kind of news. You feel so alone—almost like you are dreaming or watching a soap opera plot unfold. A room full of personnel from the best medical facility on the planet saying basically: "We're doing all we can to help your daughter and it just isn't helping and we have to decide what to do about it." No parent should ever have to make this choice… but alas this is what Laurie and I face now.

After that we had to go back to Franklin Square and give the news to Laurie. How do you tell a new mother that her one-day old child is in such distress and not likely to survive? Somehow I got the words out. All I could do was hold my wife tight as she cried. We just kept thinking: "With so many exams, how could they have something this major?!" But on another level, as much as we would like to, we can't go back and undo it.

Later that day, we received visits from John and Kathy Gates (Laurie's brother and sister-in-law) and later from GranAddie and Pop (my parents) and Steve and Trish Audi (good friends.) Everyone visited Becca in the NICU—two at a time. (Becca seems to be doing quite well by the way.) My mom and dad had a chance to hold their granddaughter. Then later in the evening Ann Atkins and Ann Adams (pastor colleagues of Laurie) came and visited and prayed with us.



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Saturday, May 3, 2008

More Bad News ... and some good news

Hello All:
 
Last night we learned that scan of Hope's head indicated "lesions" on her brain.  And as best we can understand, they are not thought to be the result of yesterday's trauma, in other words they are older indicating she had some kind of problem during pregnancy that we never detected despite many many ultrasounds and several more detailed analyses along the way.  (Of course, these problems might be why she struggled so much yesterday -- or part of the reason.) You just shake your head and say: "How could they possibly miss this?!"  But with all our technology, I still think it's hard to see everything.
 
You can imagine this has us worried.  It's like we've gone from bad to worse for our little girl.  The positive news is they have made some progress with her breathing though they are still having trouble getting her blood pressure stabilized and the meds they have tried -- as of early this morning -- really have not worked.
 
Grandma Gates and I will go to Hopkins today to see Hope and also have a meeting with doctors.  I am sure they want to explain to me (us) what is going on in more detail. 
 
The better news is that Becca seems to be doing well.  Dad got his first chance to hold her last night and again this morning.  Mom is getting up on her feet after surgery and hopes to get to the NICU to hold her daughter this morning.  They also hope she can try breastfeeding Becca today.  The key to her getting out of NICU is being able to eat -- she is now breathing ambient air and seems to be doing fine as of this morning when daddy visited.
 
Just keep praying.  We still believe God is in control even if we feel like we are totally powerless and spiraling out of control.  We need the prayers of others right now because sometimes it is hard to put words to your own prayers when you are feeling, if I may speak bluntly, pissed off at the whole situation with Hope's diagnosis.  We "did everything right" with monitoring and they still managed to miss something that appears to be pretty major. 
 
ALAN (For Alan & Laurie)


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Friday, May 2, 2008

Hope and Becca are Born ... but not without complications

A quick update as of about 6 PM Friday ....

Hope Marie and Becca May entered the world at 10 AM this morning.

What often comes after that is mother and babies are doing well.  Unfortunately, we had some complications.

Hope has had to be transferred to Johns Hopkins as of about 4 PM today.  Hope was born with her lungs full of merconium (from having a bowel movement in utero) and while this is not uncommon, the merconium was unusually thick and difficult for the doctors to clear out of her little lungs.  It took them five minutes or so to clear it out.  (You could tell something was wrong because you never heard her cry and all these people were huddled around her working fast to try and help her.)

They took Hope to the NICU and worked with her and put her on ventilator there, but later determined the best course of action to be to send her to Hopkins where they have access to treatment options not available at Franklin Square -- infusing nitrous oxide with oxygen helps breathing and they can do that at Hopkins. They hope this will help her to get her lungs cleared out.

The doctor likened this to water going down the wrong pipe only it gets all the way down in the lungs and it's not water its feces!  It's equivalent to her having pneumonia.  He said the stuff obviously tastes horrible and she is trying to get it out but her lungs are all filled up with the gunk so she struggles to breathe on her own.  They gave her antibiotics to help her fight off the pneumonia but they've also sedated her so she doesn't struggle as much.  Full term babies with this condition are actually more difficult to deal with than premature babies because their lungs are mature and they want to breathe on their own and it's hard with all that junk in their lungs.

So, we have no idea what this means long term, we just focus on doing what they need for her to survive. There were some positives.  Through it all her heart has been beating strong and blood pressure is good.  Early test indicated that oxygen is flowing despite the struggle to have her lungs function. We just have to take it day-by-day right now and see what happens.  I'll probably go down to Hopkins and see her tomorrow.

Becca meanwhile also went to the NICU.  She came out rather anemic and apparently despite what seemed like 500 trips to monitor them, they did in fact have twin-to-twin transfusion going on and Hope was drawing blood away from her sister, which may have exacerbated Hope's problems breathing.  Becca seems much better overall than Hope.  She is in the NICU at Franklin Square and she has a tube, but it is to help slow her breathing a little -- she is not getting oxygen.  She actually reminds me of how Brady was when he was first born -- he spent a few days in NICU because he came out with some struggles breathing.

So, I never would've guessed all this was in the cards when I went in at 7 AM today. I was all worried about having twins; I never considered there would be health complications.  I guess I assumed after all we'd been through, we would have one part of this pregnancy not be complicated, but it seems this is not the case.  So you try and trust God to work this situation through.  What else can you do?!  As a parent you feel POWERLESS.  You just have to sit and watch the doctors and nurses do their work and hope the God BREATHES for them and supplies what they can't supply on their own until they can start doing it themselves.  You pray they won't have longterm health problems as a result of this ordeal, but like I said, you really have to focus on the present moment right now, and then deal with tomorrow and the next day when they come.

It's been quite a day and we are all exhausted.  Laurie is recovering from surgery so she in particular is tired out from the physical stress and the emotion of the day.  Please keep us in prayer -- especially little Hope who seems to be really struggling.  I pray she is in good hands at Hopkins.  It's so hard to figure out just "how serious" this is and whether she will get better in time.  Babies tend to be fairly resilient so I hope so.  It looks like her name 'Hope' is more apt than ever! I think Becca is going to be fine, but they will keep watch on her as well.

ALAN (For Alan and Laurie)



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