Sunday, January 29, 2012

2012: This Year I Will...

My friend, Brooke has an inspiring list of goals for the year and I decided to make one for myself and even steal a few of hers. These are fun things to make happen, not really self-improvement goals that you are forcing yourself to do. There are a few things I would like to do that I never get around to. Here they are:

1. Create A Masterpiece
I have an art degree, the know-how and tools, but rarely ever create art for myself. This year is the year to create! I bought a large framed "painting" at the Salvation Army a few months ago for about $8.00. I want to paint over it and create a beautiful piece for my living room.

2.  Frame Old Treasures
I have pretty much every piece of artwork I have ever created. I went through all of my high school and college artwork last week and pulled out some pieces to frame and display in my home. What is the point of having it if you never look at it? Maybe a gallery wall?

3. Downsize Personal Art Collection
Like I said, I pretty much have every piece I've ever made. Including all 23 prints from my 23 print series. I really don't need to have 23 copies of the same piece of art. I've never been motivated to sell my own art and so my goal is to actually package and sell some of my artwork.

4. Execute Some Pins
So many pins, so few of them actually attempted. I want to continue trying new recipes and creating beauty using my boards on Pinterest as inspiration and documenting my attempts here. Viva la Pinterest!

5. Send Letters
Send some sort of snail mail to family and close friends at some point this year. Last year we sent Valentine pictures. Maybe Valentines will become our yearly mail-out.

A Turkish Valentine

Lucy In the Sky With  Diamonds
Thinking of You

6. Family Trip
Family vacation time. Plans are in the works already... :)

7. Have A Party
I love planning and throwing a party. I have at least two murder mystery dinner party games unopened in my game closet, a new collection of mini glass coco cups for a hot chocolate party, I love me a good ol' Asian Dinner Party Pot Luck or even a Turkish Dinner Party. Just need to pick the party and start planning.

Turkish Delight

Chicken with mushrooms, kofte (meat balls), Turkish pilav, assorted veggies.  

So Turkish

8. Draw
Fill at least one sketch book. I have so many blank books and never actually draw anything unless someone asks me to. These inspire me.

9. Portraits
Draw some portraits of Zach, Lucy, and Peter and pick one to frame and display. This one is a tall order, but I looked at my head drawings and portrait drawings and it made me wish I had some of the people I love most.

10. Braid
Learn how to do a fishtail braid. Seems complicated, yet easy?

I will keep you updated on the progress! :D

Friday, January 27, 2012

We Believe

Here is the link for my profile, I am still trying to figure out how to post it on my side bar.

I'm a Mormon.

What to Say When You Don't Know What to Say

I got a bunch of pamphlets from the funeral home when Zach and I started making arrangements for Peter's funeral. I thought they were all well written and helpful. I thought this one in particular was really good. "What to say when you don't know what to say" is exactly what everyone wants to know at some point in their lives. If you haven't been there yet, you will at some point in time. Even when dealing with something difficult that isn't a death, these guidelines are a great place to start for comforting and helping anyone who is going through a difficult time or trial in their life.

Even before I had read this information I had been thinking about the topic and contemplating what I have learned from this experience. What is the most helpful to someone who is going through a hard time. Here are some of my thoughts on the topic from the loving and generous examples of those around me.

1. Lots of Boxes of LOTION Kleenex

Whether a death in the family, throwing up, or just a sickness with a runny nose, they will always wish they had more lotion Kleenex because if they are crying or having a runny nose for more than one nose wipe, they will be in dire need of lotion Kleenex. Otherwise, after two wipes, their faces and noses will be red, dry, and sore.

You can never have too many boxes of lotion Kleenex.

2. Food

A staple in grief support, food is always welcome, but here are some insights I've gained.

- Space it out.
Most meals are more than enough for one meal, and some can even last up to four days. Instead of bringing meals every day, space them out to every-other day so that their fridge doesn't get filled up with too many leftovers. Not everyone is blessed with a deep-freeze freezer in the garage.

- Bring it two weeks later.
When someone has a new baby, or a surgery, etc. people are usually ready and eager to help out at the beginning. That is helpful. It is also a pleasant surprise and much appreciated respite to have someone bring you a meal a few weeks later, when things have died down but you still haven't fully recovered.

- Gift Cards/basket
If you live far away from the person you wish to comfort, gift cards to local restaurants or a gift basket can show you care and are thinking of them. And who doesn't love getting real mail?

3. Massage

A gift certificate for a massage from a professional masseuse. So needed. A great way to feel like you are actually helping relieve some of the tension from grief and stress. Who doesn't need one?

Probably something they need- but wouldn't ever buy for themselves.

4. Suggestions

When offering to help saying "just let me know if I can ever do anything to help" isn't the most effective. Part of the problem is that the person who needs help isn't always sure what you are able, or comfortable, doing. What they might really need is someone to clean their bathroom, but what you had in mind was more like giving them a ride. Or maybe they need someone to watch their children, but you work during the day when they need the help.

When offering to help, give lots of suggestion of what you are comfortable helping with, that way they know that they can come to you in that circumstance. For most people it is uncomfortable asking others for favors, so it definitely helps to know what the other person will agree to before you ask. Specifics help.

Some examples:
"I would love to help by: ..."
- Coming over and spending the evening with you while your husband is working (or day)
- Taking your child for the day so you can make funeral arrangements (or whatever)
- Giving you a ride to church, the hospital, etc (or your teenager, or kids)
- Having you over for dinner on Wednesday night (be specific)
- Making burial clothes

Nobody wants to ask you to clean their bathroom, but that might be what they really need. Offer anything you are willing, able, and comfortable doing.

5. Offer Again

Another problem with offering help is that the person usually isn't looking for help at the exact instant you offer it. Whether they are just starting to deal with the grief or a tragedy and can't think about it right now, or they just don't need anything right now, or they are a new mother and don't know what they will need because they have never done it before. Offer again.

Make sure they know your offer is sincere by offering multiple times. Sometimes someone would offer to help me with something and I would say that I didn't need it then, only to need it later but didn't want to ask. It's a blessing when the person feels the promptings from the spirit and acts on it, and makes the offer again. It is a lot easier to accept an offer than ask for it.

Something that would be really helpful would be your phone number on a card with a list of things you are ready to do to help. Put it on a sticky note, the back of your business card, or anything handy. That way they will be able to remember who offered what, and how to get a hold of them when they need help.

One thing I noticed since Peter is that my sense of time and my mental faculties were seriously messed up from lack of sleep, stress, and dealing with the situation. Writing things down is very helpful later when trying to remember things.

6. The Written Word

Some of the most touching things we received were handwritten notes, cards, and letters from family and friends. Reading the heartfelt words of those we love mean so much, and it is so nice having them written down so we can re-read them whenever we want to remember and think about Peter.

Share your own grief and happy memories of the person.

7. Pictures

You can't have enough pictures of the one you love, who is now gone. If you have some, make a copy for the family or friends who are grieving.

Peter's burial shoes, made by a dear friend as a favor.

Monday, January 23, 2012

Peter Allen Rockwell Davis

A poem written for Peter by my sister, Emily.

Peter Allen Rockwell Davis
October 3, 2011 
By: Emily Soule    

We saw you today.
In days past, we might have seen a dark film covered with splotches of white.
Later, we might have been able to make out a hand, a foot, or the curve of your head.
But today, today we can see you in real time, we see you moving and we breathe a sigh of relief.
We see you twitch, and clench, and stretch in your warm, watery surroundings.
Dark spots on the ultrasound of your brain.

For nearly nine months we've waited, though I can't say patiently.
We've crocheted all the sky blue afghans, and stitched every thin, flannel, bear covered receiving blanket you could need.
Gathering together around you and your mother, we've supplied you with diapers, clothes, booties, bottles, and bears.
Mostly blue, probably more for our lack of imagination than for your personal preference.

A planned birth come too soon.
Doctors are much smarter than they used to be, they will make sure you and your mommy are okay.
Don't worry, you're safe now.
Five pounds.
It's hard to believe such a little baby took up so much room!

You've already beaten the odds.
Extra genetic material on the 18th chromosome brings trials and pain no little baby should endure.
But you're not alone, your mommy and daddy are stretched thin with agony and love.
One on the outside, like me, can't fully understand but I still feel.
Your little heart beats abnormally.
Pat pat, pat pat, pa—pat pat.
Even without that extra challenge, your life is fated to be a short one.
Science is against you, most give you hours, some give you days.
Your family gives you eternity.

The Weaver

by B.M. Franklin

My life is just a weaving
Between my Lord and me.
I cannot choose the colors
He weaves so skillfully.

Sometimes He weaveth sorrow
And I in foolish pride
Forget He sees the upper
And I the underside.

Not ‘til the loom is silent
And the shuttles cease to fly
Will God unroll the canvas
And explain the reasons why-

The dark threads are as needful,
In The Weaver’s skillful hands
As the threads of gold and silver
In the pattern He has planned.

Sunday, January 22, 2012

A Letter to Peter From Dad

December 9, 2011

Hello Buddy-boy,

I’ve often called you buddy-boy and it holds a special place in my heart. You are certainly my buddy and certainly my boy. I wanted to write you a letter and tell you a couple things that you might find interesting.

Your mother is a complete sweetheart. She loves you so much. She wants so much to help you be comfortable and happy. You are a lucky boy. She misses you a lot and will until she comes to join you. I hope you and Jesus can find a way to help provide her extra comfort.

If you don’t remember, your mother would largely take care of you during the morning and afternoon and I’d pick up during the evenings and nights. I became quite a night owl and enjoyed spending this quiet time with you. I always hoped I could be the one to be with you when you passed on and I am grateful you gave me that opportunity. It was truly an honor.

I’m not sure exactly how the resurrection will take place, but I have two ideas about how we’ll be reunited. I was hoping I could pick you up in San Angelo if possible. If not, I’m sure many angels will take care of you.

I also have my suspicions about your feeding tube shenanigans. I think you wanted to switch to the green tube, because that way we’d have to be closer to you during feedings. We often held you during your feedings, but with the green tube, I had to kneel by your bed and hover over you holding the syringe. That was pretty tricky of you, but I know I got to spend some intentional time with you because of it.

I know you’re in good hands now. We’re trying quite hard to keep up with all of our responsibilities. Let me know if you need anything and we’ll also route our concerns through the chain. I miss you and love you very much.

Your dad,


A Letter to Peter from Mom

December 11, 2011

My dear sweet boy,

                I miss you. I’m so grateful that you were able to come to our family. I miss your sweet spirit and calm presence. Having you in our home and hearts taught me so many things, and helped me gain a much broader perspective and clearer view of eternity.

One of the hardest parts (besides not being able to see you grow etc., and being parted from you) is not being able to hold you. Having a baby is such a physical experience. From growing you in my womb, sickness, aches and pains, labor, childbirth, recovery, nursing, holding, rocking, kissing- you are so close to me throughout the whole experience, it is hard not to have you here to hold and kiss and just…hold. This life is us as spiritual beings having a physical experience for the first time, and man is it hard to let go of the physical. Even though I know our bodies and spirits will one day be reunited never to be separated again, it is still hard to let go of the physical.

Zach had a favorite and treasured blanket when he was little that he called Cowboy. When we first started talking about your funeral and making preparations he suggested that we bury you in Cowboy. Him volunteering his treasured childhood object brought tears to my eyes and touched my heart so much. I thought it was a perfect idea, and welcomed the thought of you being swaddled in such an object full of love and comfort from your dad.

We had a friend of ours cut a piece of Cowboy down to size and line it with a soft white fabric on the other side, keeping the original patchwork on the front. In the end she rebound Cowboy to a normal receiving blanket size and ended up with two little mini blankets that she lined. One you were buried with and she gave the other to us, along with the original (although now somewhat smaller) Cowboy. This little foot by two feet of fabric has already brought me such comfort as I now have something that I can hold and think of you. It reminds me of its little twin that you are wrapped in, and gives me comfort thinking of the love and care that surrounds you physically, and it helps me to have something to hold in your stead for the time being.

Maybe part of the reason I was so interested in other people meeting you and knowing that you existed is because I am afraid of myself forgetting you were ever here. I don’t want to forget you. I want your life to have a permanent and visible impact on me. I don’t want to just move on. But, that’s kind of what you have to do it seems- in order to be able to function and take care of yourself, your marriage, your responsibilities and family. Maybe I have put too much distance between myself and this experience.

I want to be able to remember every sweet and painful moment with you. Each heartbreaking memory. Every little piece of heaven. I don’t want to forget any little part of you. I am so glad I took a million pictures and videos of you. I knew one thing I would never regret was taking too many pictures, but I might regret not taking enough- so snap away!  

I want to memorize your smell and how you felt in my arms, and how you looked. Every single little expression and sound. I want to remember how much room you took up in my body, in my bed, then in the co-sleeper and then in the living room with all your equipment. I want there to always be a little bit of an empty space in my life and heart where you were and always will be. I don’t want to become completely whole again if that means losing the space where you were.

I guess that’s why we have the Savior’s atonement that makes us whole again in due time. In the resurrection we will be together again, and my pain will be as though it never existed. If you remember, as it says in “The Great Divorce” by C.S. Lewis, “Heaven, once attained, will work backwards and turn even that agony into a glory.”(p.69)

I imagine our hearts will burst from being so filled with love and light from His glory. We will be together forever in His presence. That’s my goal. It’s so easy to be lazy in making choices, to just do what comes easily. But making it back to Him, and to you, isn’t going to be that way. It will have to be intentional and being intentional is difficult. You have to really want it. You, Peter, are really good extra motivation for me to really want it and make it happen.

I’m glad that you had the opportunity to come to Earth and gain a physical body which is essential to your eternal progression and happiness. It was sad when you had to leave us, but I am also relieved and happy that you no longer have to experience the pains and trials of this mortal existence. I am happy that when you reunite with your body again that it will be incorruptible and whole. You won’t have to suffer having physical imperfections that limit your body’s capacity for function, growth and development.

My perspective on a perfect body has also changed after having you. Your body was exactly what Heavenly Father gave you, and was perfect for your mission on Earth. Even though it had flaws in it that prevented you from functioning normally and ultimately caused you to die, I resent people thinking that your body was just a genetic accident or a mistake. You were perfect to me.

When I first saw you I was taken back by your appearance and situation. But I quickly grew to love you and see beyond the limits of your mortal body and the medical equipment surrounding you. At first I was more afraid that everyone that saw you only saw the physical characteristics of your genetic disorder. It made me defensive and self-conscious. I quickly realized that all the nurses caring for you and everyone that came to see you only saw a beautiful baby boy, who was cute and lovable; not the so-called imperfections of your mortal body. Everyone was quick to tell me how sweet and adorable you were, which reassured me and eased my worries. I then realized that it didn’t matter a whit what anyone else saw and thought of you, you were so beautiful and I was blessed to be able to see you as Heavenly Father saw you- his perfect creation that I helped make. It is truly an honor to be your mother and I’m so grateful to have you in our family.

I’ve definitely enjoyed several tender mercies and moments directly from Heavenly Father throughout the past months. When I left the hospital to spend the night at home away from you for the first time, I was leaving the building and was unprepared for the wave of emotions that hit me as I walked away. It was so hard to leave you there by yourself and even think about leaving by myself. You just never think of a scenario where you leave the hospital without your precious baby in your arms, and so I was overcome with emotion when that was the case. I had tears rolling down my cheeks as I told Zach that I felt so sad, and he responded perfectly when he told me that it was good that I was sad, and that it was okay to be sad- it was a sad thing to leave him there. He didn’t tell me not to be sad, or to be happy. He recognized and validated my right to be sad during a sad experience. I am so grateful for that. As we turned toward the car I noticed the sun setting before us and the gorgeous sunset it made.

It was as though Heavenly Father knew my pain and sent a postcard direct from heaven as a tender mercy. A gentle reminder just for me that He knows me and is mindful of me. To everyone else, it was just a normal daily occurrence, but to me it was a warm embrace from my loving Father in Heaven who knows how much I love sunsets and the beauty of nature. The light and color fills by soul with joy. Something I always find interesting is that the thing that truly makes a beautiful sunset is clouds. Without clouds the light has nowhere to reflect off of, and the sunset just isn’t as spectacular. It’s an appropriate metaphor for life, and I’ve always loved the principle of opposition in all things. Without the bad, we would not know good because we would have nothing to compare it to. The trials in life help us appreciate all the blessings and daily beauties we experience, just as clouds enhance a sunset, our pains and trials enrich us as people if we let them and help us recognize all the good in our lives. Trials can also help us know how to comfort others as they go through trials of their own.

I’m so grateful for the time I had to share with you, and often wish that I could have had you longer and taught you more, but I know that you are with our Heavenly Parents now, and that they are watching and taking care of you until we will be reunited again. Oh, how I long for that day!

The thought came to me the other day about how when Lucy is gone for the day with friends babysitting her it’s fine. I’m fine, she is fine. She is not with me, but is still there, just not here right now, and that’s okay.  I realized that it is the same with you. You are still there, just not here with me right now. It’s as though you are being babysat by our Heavenly Parents right now, and who better to do it than them! I felt a lot better after the spirit gave me this insight, and it has become easier for me to be parted from you because of it. It helps me retain my eternal perspective and makes eternity feel a lot closer.

I love you and hope we will be reunited quickly after the resurrection. I hope I will live my life worthy to meet you and Father in Heaven in the Celestial Kingdom.

Until then,

Your mother- Tracy

Clouds enhancing the beauty. Photo by Scott Soule

Until We Meet Again

By: Zach Davis
November 23, 2011

Peter drifted peacefully off to sleep at 1:20 am, while laying in my arms. Thanks to all of our family and friends for your thoughts and prayers. We certainly love and miss him, but we know he is happy and comfortable and we will see him again.

Until we meet again.

Relaxing with Dad.

Comfortable in Dad's arms.

Baby Peter: Days 45-50

by Tracy on Tuesday, November 22, 2011 at 2:36am

Monday November 21, 2011

Happy seven week birthday, Peter!

It’s been kind of a rough week for Peter. Everyone in the family got a cold (including him) and has been coughing with sore throats and achy bodies. It is pretty heartbreaking to see a little baby coughing and sounding so awful.  Nothing better to make you feel useless, and all that we could give him was a very small amount of baby Tylenol to hopefully help him feel better. On top of that Peter has managed to pull out his feeding tube twice more since last Saturday’s adventure. Each time he had to wait for at least an extra hour past his feeding time, most of which he spent crying and exhausting his little body with the effort.  Each time after we finally got a new tube down his throat and re-taped to his chin, we fed him and he passed out in exhaustion.  It felt like each episode probably shortened his life by three days!  Somewhat of a traumatic experience each time for his fragile body. 

My brother Boyd flew in on Thursday night from Utah to spend two weeks with us for Thanksgiving.  It has been awesome having him here, and I am so glad he was able to meet Peter and also spend the holiday with us.

On Wednesday or Thursday when Peter was getting one of his feeding tubes replaced, the hospice worker noticed that he wasn’t doing as well, and estimated that he had 7-10 more days with us. Then on Sunday he sounded so awful coughing and wheezing that Zach called her up and she came over to check him again. She said that he now had fluid in his lungs and that he likely had 72 hours left with us. She said that he has terminal congestion. He has also started to have more residual when we feed him and each feeding is taking longer. As a result, we have decreased the amount of food we give him from 39 ml to 20 ml. We have also started giving him another prescription medicine (along with his usual lasiks) to help him relax and be more comfortable as his little body struggles to breathe through his sickness.  He sounds very congested, and sneezes and coughs with lots of effort.  The medication he is on is an anti-anxiety medicine which calms him and it also makes him sleepy, which is good because when he is sleeping his breathing is more relaxed and comes easier. When he wakes up he has a harder time breathing and is wheezing and coughing.

It has been hard to watch him be so sick, and I know that when his time comes it will be a release from any pain he is in, and that he will be in a better place.  I’m not afraid of death, or of him dying, and know that it is an important part of the plan, and a good thing,... but it’s hard to say goodbye, even though I know it is only for a short time.  Even though I know this, it doesn’t make it hurt any less. I know that it will be a good thing for him, but it’s hard for us – those that he leaves behind.  

I will miss him so much, and think about him all the time, but I am so grateful for every day we have had with him and that he was able to spend so much happy time with us. I’ve learned a lot throughout this whole experience and am grateful for beautiful memories and moments I’ve spent with him. 

I will love my sweet baby forever, and can’t wait to be reunited with him in the eternities.  

Peter aka Choir Boy

Snuggling with Cowboy, his blanket.

Lovin' the love from his NICU nurse who came to visit.

Reading Peter my favorite book, The Great Divorce by C.S. Lewis.

Uncle Boydie

Happy Week Seven Birthday!

Baby Peter: Days 37-44

by Tracy on Wednesday, November 16, 2011 at 12:16am

November 15, 2011

Happy six week birthday, Peter!

Things are going well. The hospice worker came yesterday and said that Peter is staying the same, his color was good, and said she would wait until Thursday to come again, since he is doing okay. So, that is good news to me. Maybe I am in denial, but something inside me thinks that he will make it to thanksgiving, and even to Christmas, but who knows. It could also just be wishful thinking. :) 

The one thing that the hospice worker noticed was that Peter was having small focal seizures with his eyes, where his eyes look back and forth rapidly for a few seconds. This is just another indicator that his brain isn’t developed like it should be, and we will keep watching to see if he has any other seizures. Some babies develop more severe seizures, and some don’t, so we hope he won’t.

On Saturday we decided to have a family outing and went to Family Day at the art museum. We all got ready, got Peter hooked up to his portable oxygen tank, and were about the pull out of the garage when I noticed that his feeding tube has accidentally gotten pulled out while we were getting him all buckled up in his car seat. So we had to unload the car and call the hospice worker to come and put a new tube down his throat. Eventually we were ready to go again and made it out the door and off to the museum.

 They country they were spotlighting  for the family day was Fiji, and Lucy had a good time making a clay shark tooth necklace, coloring,  eating her peanut butter-jelly-banana roll, and running around while waiting for the Fiji slide show to start while Peter enjoyed his nap in his stroller. It was nice to all be together as a family and make some memories.

When we were told that Peter wouldn’t make it to Thanksgiving Zach and I discussed what things we would like to do with him as a family before he was gone. What would you do with your infant if you knew they only had three weeks left to live? What would you want to share with them? What would you want them to experience? It’s important to me that we make the effort to create family memories and share with Peter those things that are important to us.

It could be easy to just let the days pass by and let him sleep in his little bed all night and day without even interacting with him. He doesn’t ask for much, and would probably be content to just be. I make it a point to take him out of his bed, and hold him every day. To stop and make the time to have him lie on my chest and just drink him in. Memorize his smell and kiss his head. Rub my cheeks across his peach-fuzz hair as he falls asleep under my chin.  Stop and give him a kiss on the cheek whenever I pass by his crib, and tell him how much I love him.

In a situation like this in order to function you forget that your baby is dying, so that you can go forward with the day and do what needs to be done. You just put it out of your mind so that you can smile and enjoy the time you have with him, and not just cry and lament his fate. But when you do this (forget reality) it is easy to forget to stop and cherish each moment that we do have. You have to remind yourself that he won’t be here for very long, and that when you have a choice between anything and holding your baby, you should choose spending time with that precious baby, because the housework will be here when he is gone. You can check your email after he falls asleep. You can hold him while you relax and watch a movie. After he is gone you will regret every moment you chose not to spend with him while you had the chance.

And then you realize and are reminded that that is the whole point of life that has been summarized and condensed in this one situation. Good, better, best: choosing the best option. When your one-year old comes over and asks you to read a book to her do you keep reading the article you are reading, or do you stop and give her the love and attention she is asking for?

This experience has made me examine my priorities and reevaluate how I spend my time and what I focus my energy on.  I still make bad choices, but my vision has been made so clear and reality has come into focus. I hope that I can continue to improve and when faced with a good option, a better option, and the best option, that I choose the best. And that I choose the best in all areas of my life. 

Our beautiful family.

The Podge

Lucy modeling her new shirt.

Fresh and clean after his bath.

Handsome Boy.

The Thinker. Peter pondering the mysteries of life.

Family Day at the art museum. 

Baby on your chest = Heaven.

First smile?!

Happy Six Week Birthday!

Family scripture and prayer.

Peter listening intently to family scripture and prayer.

Baby Peter: Days 23-36 Update

by Tracy on Tuesday, November 8, 2011 at 1:16am

November 7, 2011 Days 23-36

Happy five week birthday, Peter!

It’s been kind of a crazy two weeks.

Wednesday night (Oct. 26th) Zach and Lucy went to our church’s trunk-or-treat.  On Thursday Lucy woke up from her nap and had gotten sick with the flu, which I suspect she got at the trunk-or-treat the night before. Luckily is seems that it was only a 24 hour bug. On Saturday we had family pictures taken by one of the hospice workers.  I hope they turned out, and can’t wait to get them back!

On Monday was Peter’s four week birthday and his first Halloween! The hospice worker visited and noticed that peter's capillary refill in his feet was slower, and that he has been showing some possible signs of neurological problems, indicating that his brain isn't working as well as it should. She told us to keep our eyes open for possible seizures. That night Zach came home early sick with the flu and was sick all night. The next morning I woke up at 6am to feed Peter, and got sick myself. We called a friend of ours who came over and took care of the babes and us while Zach and I were both sick in bed all day. Luckily Lucy had already gotten the bug, and our friend was able to take care of Peter so that we didn’t have to touch him and contaminate him too.

The next day, Wednesday, was my 26th birthday! I spent it by sleeping all day and recovering from being sick the day before.  Thank you to Zach for watching the babies all day so I could sleep. The hospice worker visited again and saw that Peter’s capillary refill was even slower, and his skin was mottled in color. His bowel movements haven't been as regular either, so she thinks that his digestive system is starting to slow down as well. 

All of these things indicate that we have started down the path of his deterioration of health. Zach commented to her, "So he probably won't make it to Christmas then, huh?" to which she replied, "No. I don't think he will make it to Thanksgiving even." That was kind of shocking to hear her say, even though we knew that was a possibility. 

It was really hard to hear her say that, but I am glad that we at least know that is where we are at in the progression towards death so that we can mentally, emotionally, and physically prepare for it. She suggested that we start working on funeral plans.

Thursday was Peter’s official one month birthday! I noticed that his color was paler over all, but still hadn’t seen any seizures and on Friday the hospice worker came again and said that Peter’s capillary refill in his feet was the same as before. So, that is good. On Saturday Zach and I got a babysitter and went to the funeral home and cemetery and started making arrangements there. It was a very emotional day overall, but it feels good to have a plan and have started the process and be prepared.

Which brings us to today, Peter’s five week birthday! The hospice worker came this afternoon and said that Peter’s feet are still the same and his skin isn’t mottled anymore, but he continues to be paler overall in color. I asked her again today what her experience was for the longest that a baby, that she had cared for with Trisomy 18, had lived after starting to have profusion problems (capillary refill, and mottled color, etc.), like Peter was having. She said that the longest was three to four weeks after the first day of profusion problems started. So, that gives me a time frame and mind set so I can be ready emotionally.

Hopefully we can have more time that just three more weeks with Peter. I’ve been pretty emotional the past few days as we’ve been spending time together with him, and trying to prepare for his death. It was hard to hear that he probably won’t be here for thanksgiving and took me a few days to be ready to write about it and let the world know that his health has started to decline. It’s a lot harder to write an update when the news is bad.

We've been blessed with a great support system that has helped us through this whole ordeal, and taken care of us while we've been sick. I've been thinking a lot about all the things I have to be grateful for, and all the blessings Heavenly Father has placed in our lives. Despite this sad circumstance, I have a pretty wonderful life. I have a beautiful family and home, a wonderful marriage, the Church, wonderful friends and family, financial security, our health, and a strong foundation and relationship with the Savior and our Heavenly Father. I'm grateful for all the large and small blessings in our lives, including Peter. He is a darling, and we are enjoying, and are thankful for, every day we have with him. 

Ready for Trunk-or-Treat

Family Picture Time

Happy Halloween!

Happy Four Week Birthday!

Snuggle time with Dad!

Giving Peter lots of love.

Happy Five Week Birthday!

Lucy giving a congratulatory pat to Peter.

Baby Peter: Days 16- 22 Update

by Tracy on Monday, October 24, 2011 at 9:23pm

October 24, 2011  

Happy Three Week Birthday, Peter! 

Peter’s first week at home has been great as Zach and I continue to work together to establish a routine and a daily plan of action. My dad left to go back to Alaska on Thursday.  It was so nice to have him be able to stay a few more days, and Lucy loved all the cat hunting and walks they went on. We were blessed so much family was able to come and help out. So, as of Thursday, Zach and I have been flying solo taking care of Lucy and Peter. 

So far it varies every day, but I feel like we give and take to cover all the bases so that each of us are getting enough sleep, Lucy time, Peter time, and personal time. It makes a HUGE difference to have Zach home all day to help juggle the home and parenting responsibilities, and the help of friends, co-workers, and family have made things much easier and less overwhelming overall. 

Peter has developed quite a voice the past couple of days, and has actually started to cry more. Still nothing compared to Lucy at his age, but enough to hear him from the other room. I’ve also noticed that Peter is becoming more alert and awake for longer periods of time. He seems to be coming out of the brand-new-newborn stage of sleeping all the time, and becoming a bit more active. 

It’s really rewarding to watch him grow and change, even in small ways, as we spend time with him. When you have a child you often think about what they will be like when they grow up, what they will look like, what interests they will have, or their personalities. It’s hard to know that you will not have a chance to see those things, and watch your child become a man in this life, so I really appreciate being able to have Peter long enough to watch him grow at least a little and see at least a glimpse of who he will someday become. 

Lucy loves running into our bedroom every morning after she gets up, to say good morning to Peter. She runs so fast she usually runs right into the side of his co-sleeper and bounces off. She loves peering through the mesh sides of his crib and tells him “hi” over and over again. She is working on learning how to pronounce the “P” sound for Peter, and is doing a pretty good job. When she and Zach got home from church on Sunday we let her sit in the rocker and hold him for a little while. She LOVED it, and when it was time for me to take him back she tightened her grip and would not let go, telling us “No!” She sure loves her little brother.  

The hospice worker has come several times and Peter has received glowing reviews each visit. His lungs seem to be clear of fluid and sound good, his color is good, and he seems to be doing well! He did have a goopy eye for a day and a half, but we continued giving him his regular eye drops as she suggested, and it cleared up on its own before we even got him to his “well baby” visit on Friday. The hospice worker is wonderful and I appreciate everything she has done already. She is easy to talk to, and answers and addresses all of our questions and concerns.  Her guidance gives me confidence in our ability to take care of Peter. I'm so grateful that she makes herself so accessible, and is always only a phone call away.

On Friday we gave Peter his first bath at home in preparation for his first doctor’s appointment with his new pediatrician, which was also his first official outing with mom and dad. We had a friend from church come spend the afternoon with Lucy and we took Peter to the hospital for his check-up. Everything looked good and as an added bonus, his umbilical cord finally came off while we were at the office.  Peter’s weight was 5lbs 4oz, a little bit of a gain from his weight when they discharged him from the hospital a week ago. Go, Peter! 

The main reasons for Peter’s visits with the pediatrician is to monitor his weight and adjust his calories and feedings as necessary, adjust his lasix as necessary, and take care of any other uncomfortable symptoms that could be alleviated with the proper medications to increase his comfort as his health declines. So far though, his health is steady and he seems to be doing very well. 

I cannot express enough gratitude for how much the amazing doctors, nurses, and staff at the hospital have done for us. Not only in taking wonderful care of me physically during pregnancy, delivery and recovery, taking care of Peter while he was in the NICU and after, but also in caring for us emotionally and spiritually as we have dealt with this heartache. They have prayed for us, cared for us, comforted us, and shed tears with us. We have been so blessed throughout this entire experience to have had people placed in our path to help us. I feel like I have made some lifelong friends who will always hold a very special place in my heart because of the special place they have made in their hearts for our Peter.  Heavenly Father knows us, he knows our pain and trials, he knows our needs, and he guides those around us to be His hands on Earth to help us in our time of need and in answer to our prayers.

Lucy eagerly runs to Peter's bed each morning to say "hi" to him.

Grandpa Billy and Peter

Peter practicing his modeling poses.

Lucy checking up on her Petey boy.

Proud big sister.

Giving Peter kisses.

Happy Three Week Birthday!

Our sweet boy.

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