Baby Tatum

I'll let the blog speak for itself. This is the story of the three month odyssey my friends have gone through with the diagnosis, decline and ultimate death of their beautiful little one. Heather, who writes it, is an amazing woman. Her family is amazing. It is worth taking time to read through their story which is still ongoing.

Tatum Time

Changes

We've moved.
Alphy lost his job again (because he's "too introverted for the direction the company is headed").
Matthew is almost potty trained.
Jamie broke her arm.
We have a garden that changes every day.
Angela, Jamie and Matthew love playing in the dirt. Oh wait, that isn't a change :-)


Those are just a few of the changes in our lives recently.

It's all coming back.

The wonderful lady who has been a counselor, photographer, and a friend to many, many families who have lost little ones, has just lost her seventh child. She got involved in Common Bonds and the Angel Babies programs because she lost her oldest at 18 months from a seizure disorder. Six children and 18 years later, she lost her youngest from the same disorder. Baby Tatum made it through her first year before her little body couldn't take it anymore.

I have been reading her blog over time and each post brings back a little more of the pain and memories associated with losing Hayden. At the same time, it has brought me more comfort and healing just reading about the tender mercies of the Lord experienced by Tatum's family.

I know that Heavenly Father and Jesus Christ love us. The Atonement will heal all our wounded hearts. We will be together again.

Ultimate Irony

The man who was just convicted on three 1st Degree murder charges and a manslaughter charge in the deaths of three aborted infants and the death of a woman who came to his clinic, plus guilty on more than 200 other charges, has given up the chance of appeal in exchange for life in prison. So the man who made his living off of ending as many lives as possible for money and convenience, is grasping for as much life as he can get for himself.

Kermit Gosnell, you are a coward!

P.S. I don't normally like naming names of awful humans like him, but "Doctor" Gosnell's trial has been covered so poorly and the story needs exposure.

I finally got the back story

You know that story about the ancestor who was part of the double murder that wasn't? I finally received a copy of the local newspaper account of the incident. (Much thanks to the Lincoln Lawrence Franklin Regional Library.) The basic story was true. There was bad blood between the Sheriff and my ancestor. They were arguing politics - maybe the Sheriff's election chances since he was up that year. They were both Democrats. The argument escalated. Sheriff pushed or slapped Eugene. Eugene pulls a knife and stabs Sheriff in the side. Everyone thought he was a goner for quite a while. From the story it sounds like everyone stayed out in front of the store where the altercation had taken place for a little while. Then Eugene went around back to the lot where his horse was so he could go home. Somebody followed him and shot him in the back. He bled out in 10 minutes. Other information I found earlier indicated the Sheriff lost the election and tried to contest it. He died three years later.

HTML

So I've been looking around the web at things and decided to look at an HTML tutorial. Turns out all those years of WordPerfect Reveal Codes and a year or so of XML tagging experience is coming in handy. Basic HTML is pretty easy.
NOW I get it. I can do all sorts of things as I practice.

What do you think?

I could add more stuff but I need to practice some more.

Decisions. Decisions.

Our van died. Cracked engine block. It is ten years old. We just spent $600 to find out that it will cost $2000, more or less, to fix it.

So do we fix it, or replace it? Our budget is very tight and most of the vehicles in our price range are probably in about the same condition as our van. You know, on the edge of major repairs.

If we fix it, there is the danger that the transmission could go out in the next couple years. They tend to do that around 200K miles. We are within 40K of that.

Also, our van is titled in New York State. We are rounding up all the documents we need to prove who we are so we can get the clean title. Of course, the van broke down right after we paid it off. Because we have to request it by mail, it will take 6-8 weeks to obtain the title.

Expanding our price range for newer vehicle may get us better quality, but it also puts us back into debt for a vehicle.

Right now we are borrowing our brother-in-law's car. It fits us, barely.

So, what to do?

Decisions

I have been feeling quite strongly that I should do this. I have decided to create a pamphlet or a book about the decisions people have to make when faced with the death of a child. Some of them are different from those faced by the death of an older loved one. Even if it never gets published beyond running it off my printer, I think it is still a good project for me to do right now.

My talk from Hayden's Memorial Service

This is basically what I said barring minor differences between the written and spoken.

Hayden was born 16 December at 1:31 pm. He weighed 6 pounds and was 17 inches long. He survived for 5 ¼ hours. We found out about his condition at the 20 week ultrasound. His kidneys had cysted over some time during development. Without the kidneys, there was no amniotic fluid. Without the amniotic fluid, his lungs could not develop the way they were supposed to. 

We prayed for help and we received it. We prayed for miracles and got them. Maybe not the ones we wanted but the ones we needed. 

Overall, we have felt largely at peace and able to deal with things. That has been the primary blessing or even miracle. We have had our ups and downs during the last few months trying to come to terms with everything. We will still have ups and downs for a while to come. It hasn’t been easy and won’t be easy. One verse that has come to my mind has been Matthew 11:28. “Come unto me, all ye that labor and are heavy laden and I will give you rest.” That has certainly happened to me.

A second blessing or miracle was the fact that for a baby with no lung development, he cried out when he was born.  He followed that up with a third miracle - starting to breathe on his own once he was put on oxygen. He was able to breathe for most of his time with us. He worked hard at it. Ultimately, he couldn’t sustain it but he tried as hard as he could for as long as he could.

We were blessed in the number of family members who were able to meet Hayden while he was alive. We have been blessed by the help we have received from our family, our friends here and elsewhere, by the people of Angel Watch and our doctors and nurses. For those who have brought food; listened to us when we needed to talk; those who babysat;  those who have asked about Hayden; those who have helped in any way,  “Thank you.”

We have been blessed by the words of living prophets, starting with Joseph Smith, who declared that “… What have we to console us in relation to the dead? We have reason to have the greatest hope and consolation for our dead of any people on the earth; for we have seen them walk worthily in our midst, and seen them sink asleep in the arms of Jesus. … “

He also says of little children who died “A question may be asked—‘Will mothers have their children in eternity?’ Yes! Yes! Mothers, you shall have your children; for they shall have eternal life, for their debt is paid.”⁶

Elder Carl B. Cook’s General Conference message this last October provided me with much needed perspective and some words from our current Prophet, Thomas S. Monson. He relates an incident from his first week as a General Authority, the discouragement he was feeling while traveling down in an elevator and the words that Pres. Monson shared in that elevator. Elder Cook relates:

… he had seen my subdued countenance and my heavy briefcase. He smiled and lovingly suggested, while pointing heavenward, “It is better to look up!” As we traveled down one more level, he cheerfully explained that he was on his way to the temple. When he bid me farewell, his parting glance spoke again to my heart, “Now, remember, it is better to look up.”

As we parted, the words of a scripture came to mind: “Believe in God; believe that he is … ; believe that he has all wisdom, and all power, both in heaven and in earth.”¹ As I thought of Heavenly Father and Jesus Christ’s power, my heart found the comfort I had sought in vain from the floor of that descending elevator.

Since then I have pondered this experience and the role of prophets. I was burdened and my head was down. As the prophet spoke, I looked to him. He redirected my focus to look up to God, where I could be healed and strengthened through Christ’s Atonement. That is what prophets do for us. They lead us to God.²

Through Jesus Christ and his Atonement, we can return to live with God again. Hayden is already back there. The Atonement has done its work for him. But through the Atonement, we can be healed and strengthened here. 

Elder Quentin L. Cook, a member of the Quorum of the Twelve and another sustained as a modern day prophet, outlined in more detail how the Atonement helps those of us left behind. In a talk during the Sunday Afternoon Session of this last Conference, he said: 

While we do not know all the answers, we do know important principles that allow us to face tragedies with faith and confidence that there is a bright future planned for each of us. Some of the most important principles are:

First, we have a Father in Heaven, who knows and loves us personally and understands our suffering perfectly.

Second, His Son, Jesus Christ, is our Savior and Redeemer, whose Atonement not only provides for salvation and exaltation but also will compensate for all the unfairness of life.

Third, the Father’s plan of happiness for His children includes not only a pre-mortal and mortal life but also an eternal life as well, including a great and glorious reunion with those we have lost. All wrongs will be righted, and we will see with perfect clarity and faultless perspective and understanding.

It does seem unfair in many ways what happened to Hayden. To us. But it isn’t wrong. Whatever the reason, and we may not learn it in this life, we can have peace and happiness here and we can live our lives in such a way that we’ll be with him again. Forever.

I pray we will all live so that we may have the peace the Atonement brings, in the name of Jesus Christ, Amen.

Hayden's Memorial Service

We buried Hayden in Moccasin. It was 60 degree weather in the middle of January. We got to help with everything, picking the plot, digging the grave, filling in the grave, transporting him down from Salt Lake.... I think that helped us, having been able to just about everything possible for him for his entire life. It was a simple graveside service with remarks from Bishop Adair and Alphy dedicating the grave. Everyone but Jessalee was able to make it out from my immediate family.

After the graveside service, the boys then helped take down most of a tree from the front of Mom and Dad's house because it was starting to do funny things to the roof. (Picture below is from Amaryllis' camera.)

The following weekend, back in Orem, we held a memorial service for Hayden again, for Alphy's side of the family since none were able to travel down to Moccasin. I spoke, along with our bishop up here, Bishop Grover. People complimented me on me not crying. I don't think they realized how close I was to doing so.

I shared a bit about Hayden, how many small miracles happened during his short life. Such as, for a boy with no working lungs, he cried at birth and he started taking breaths on his own. He was on oxygen but it was only a tube near his face on continuous flow. It wasn't forcing his diaphragm to move. I also shared messages from Joseph Smith. Words he had shared about those who die. After the Resurrection, Alphy and I will be able to raise Hayden.

Two of the talks from this last October's General Conference struck me and I shared those portions that helped me the most. Both by Elders' Cook. Elder Carl B Cook of the Quorum of the Seventy, shared an experience from his first week as a General Authority. He was feeling overwhelmed with the calling. He got into an elevator to go home when President Monson joined him. President Monson talked to him for a bit, and then, before he left the elevator himself, told Elder Cook "It is better to look up," meaning, look to God for help.

Elder Quentin L Cook, one of the newest members of the Quorum of the Twelve, talked specifically about death, loss and trials and how the Atonement can help those of us left behind. Remembering that life has more to it than this time on earth can help us feel relieved of some of the unfairness of life here. Ultimately, through the Atonement, unfairness will be erased, wrongs will be righted and life will continue.

I'll share the text of my talk in another post.

It was good to see so many friends and family at both of these events. It was also good to see the support we were getting from people we didn't know very well but still were praying for us and wanting to be there for us.

A Lesson I've Learned

I have been thinking back on things and wondering why I am doing as well as I have been. Earlier, I would imagine myself reacting far differently than I have been. I would put myself where I knew I would be, in the hospital room, delivery, at home with the kids and think about what I would be dealing with and what I imagined my emotions would be. I thought I would have more mental and emotional breakdowns. I thought I would be more depressed. Instead, I have had times of extreme sadness, and times of frustration borne out of the inability to do things but nothing overwhelming.

Last night, I was thinking about an acquaintance who just discovered she had breast cancer and would require a double mastectomy and I found at least part of the answer. It lies with what I learned from a Relief Society Enrichment meeting back in Logan. One of the sisters presenting was a survivor of breast cancer. She shared her story. I am going to get some of the details wrong but the message still resonates with me.

She felt the same feelings of depression and anger that are common to cancer patients. She felt gross, ugly, and yucky after her surgeries and while on chemo/radiation. Somewhere in her process, she had a change of attitude. I can't remember if the impetus was a talk in church, a blessing from her husband or what, but one day she decided to go to her treatments and NOT sit there moping and sharing depressing cancer death stories and horror surgery stories like was common in the waiting rooms. The Atonement healed her, not from the cancer but from the anger and sadness of her situation.

Her attitude changed. She was willing to crack jokes. Sure some of it was gallows humor. Some of it was fake boob jokes. Others in the waiting room began to join in. At some point, someone had the idea to have a picnic in the waiting room. They were all there in the waiting room, feeling okay, but knowing that they would be puking things up and feeling miserable for the next 3-4 days. So those cancer patients decided to enjoy the last decent meal before feeling lousy. And they did this before every appointment. As time went on, other cancer patients from other waiting rooms began to come down the hall and join their fun. Because it made them feel better.

She realized that while her bad or down attitude might not kill her and her good attitude might not save her, her good attitude certainly made a hard situation much more bearable. That is what the Atonement did for her. She still had her depressing and yucky days. She still had her anger and helplessness to deal with, but it was much easier because she allowed Jesus Christ to take some of the burden and make it bearable. And that is what I know eased the burden for us.

Multi-cystic Dyplastic Kidneys

This is not something I ever though I would have to write about. We have had a baby that did not live very long. I have avoided writing about it in most any way I can except for a few facebook posts that give precise summaries but few details.

Because it hurts. And will hurt again and again. Is knowing ahead of time better than having stillbirth or sudden death thrust upon you? I don't know. I hope never to have to compare the two. Because this is hard enough.

This pregnancy started out weird, finally settled into a typical, for me, pregnancy, and then I went in for our 20 week ultrasound. I went in alone, no big deal. We'd bring home the ultrasound pics and get on with things. Until the tech said, "There is no fluid." and "It looks like the kidneys have cysts. I need to talk to the doctor." So I got to lay there and wonder just how bad that was. Doctor S. came in and said "It doesn't look good. Babies don't survive with kidneys looking like that and without amniotic fluid. Let's get you an appointment with a specialist to make sure." She also said she was surprised the baby was even alive.

The specialist laid it out for us. No kidney function means no amniotic fluid production. No amniotic fluid means no lung development. No lung development means no chance of survival beyond a short period of time outside the womb no matter what interventions are given. It also raises the risk of antepartum death (stillbirth).

With everything laid out before us, we were given our options. Straight up abortion. Early delivery. Term delivery. Abortion was out from the beginning. That is us. We would never consider it. With my history of c-sections that left early delivery and term delivery. With early delivery we had two options, inducement by drug to try to have the baby vaginally or wait until the best earliest safe c-section delivery date (unless I wanted a transverse cut - straight up the middle).

Trying to have the baby vaginally appealed to us. Especially since I had never been able to experience it. We attempted it at 22 weeks. So we had the added burden of attempting something at a time that made it look like an abortion. The biggest difference was we wanted our baby to come out alive and have the chance to be with it for as long as it might live. Chances of survival were pretty much even no matter when we delivered so timing didn't seem like a big deal. Plus, we kind of wanted it to be over with. Get it done. Do a funeral. Move on.

Biggest problem is, I don't respond to any labor inducing drugs. Period. We tried to induce my first delivery because of blood pressure and other issues and I never went anywhere. Hence the beginnings of the c-sections. Multiple rounds of a drug that 9/10 of women respond to in the first 24 to 32 hours did nothing after way more than that. So we had to go home in defeat. That hurt. Again. I was ready to face it then. Or I thought I was. I'll never know now.

So we had to wait. We decided for early delivery still. Going to term seemed just a little too difficult especially with the physical pain that the pregnancy was causing. No amniotic fluid affects more than just the baby. It affects the mom too. No cushioning meant I felt the baby move as if it was around 7-8 months at 20-22 weeks. It meant more muscle pulling and ligament stretching. For me, it also meant I couldn't go for walks or anything like that because I would be doubled over in pain from the tugging and pulling. I couldn't do much more than fix meals, load the dishwasher and do a couple loads of laundry at the most before I had to sit for the rest of the day. And it got worse.

So, here it is December. We did it. We delivered a beautiful baby boy we named Hayden. He stayed with us for 5 1/4 hours before passing away. He was full of surprises. First off, he was a boy. We hadn't known. Without the amniotic fluid, none of the ultrasounds could see his sex. Second, he came out crying. Just two little short squawks but it startled everybody especially the doctors. Third, he was six pounds. They were expecting 4-5 because of when we were delivering. Fourth, Hayden started trying to breathe once he was on oxygen, just a little tube we held near his face to see if it would help him last just a little longer. Long enough to meet his brother and sisters anyway. His heart rate stayed up for a good 4 hours.

When the nurse showed him to us in the operating room, I cried a bit. I didn't know if he was going to live long enough for me to hold him. But I was glad he was here. During the whole time he was with us, I didn't really feel sad. I was pretty much at peace. I did have a hard time when I realized that Hayden was having more difficulties breathing. That his lungs were beginning to deteriorate. But as he stopped breathing, we just held him and held him.

We have had (and still have) some excellent support from the hospital, family, friends, and a group associated with the hospitals called Angel Watch. Heather and Marilyn from Angel Watch were there throughout. Heather took wonderful pictures and created other mementos to help us remember Hayden by.

As time goes on, I'm finding more and more things that I'm missing out on. I realized I'm sleeping quite well. Because I'm not getting up for middle of the night feedings and diaper changes. I realized as I was cuddling my 19 month old that I would really like to be cuddling my 5 day old. I'll probably find more things that I'll be missing out on. I'll be sad at times. I'll be overwhelmed by it at times.

At the same time, I haven't felt as bad as I have assumed I would. I do know he is a permanent part of our family. He will always be my son. Our son, brother, grandson, etc. My faith in Jesus Christ and His Atonement for us is carrying me through. We'll see how things go as time goes on.

Hurray!!

Knowing that we would have some major medical bills because I was giving birth, we set that up in the budget. And boy did they roll in! They didn't exceed my deductible but they were split up in ways I wasn't expecting.

At the same time all this was going on, Alphy got insurance through his work. Because of circumstances there, I ended up being doubly covered for the month Matthew was born. It also wasn't really set up until a month afterward so we had to resubmit some of Matthew's bills. Anyway, those doctors' offices submitted to the second insurance as well. And a lot of our huge bills are evaporating! Can you spell R E L I E F?!

So you wanna deliver papers?

We have been looking in to all sorts of things to help us earn a little extra money in order to pay down debt. I saw an ad that said "Newspaper carriers wanted". So I called. I thought, "I could do this. The money earned would be incentive enough. The kids and I could adjust to a more tired mommy."

I went in the very next day. I found out things were quite different from the newspaper delivery days of the 1980's (the last time I had any experience with it). 2:30 am. Just a little on the early side. And that was just the beginning.

We met at the warehouse where all the bundles are delivered. ALL different newspapers are put together into a single route in a single area, so the carrier could be delivering the local paper, several regional papers, and any or all of the nationals. They let you pull only those papers that are needed for your route that particular day. So no more extra papers and ads. You prep all your papers there at the warehouse and then load them in to your car. You are given a printout of the "best" way to do the route based on starts, stops, holds for vacations, etc. for each day.

Then you have to complete the route by 6 am weekdays and 7 am weekends. Some routes are big enough that you will be gone the entire 4-5 hours.

I found out a few things:

• 2:00 or so is too early
• 4-5 hours missing from your normal sleep is not good for you, especially if you have no way of taking a nap later in the day
• The air is just chilly enough to set off my asthma
• Matthew is not ready for me to leave him for that long in the middle of the night yet
• The routes are too far away. (A Provo or Orem route would have been better)

Maybe I could be a night "stalker" at a store in a month or two when he starts sleeping through the nights.