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.

Baby Peter: Days 12-15

by Tracy on Tuesday, October 18, 2011 at 12:07am

Home at last! After a successful test run at the hospital last night, Peter and I came home exhausted from the long day and happy to finally be home.  After unloading the bags and bags of medical equipment and supplies from the car, everyone promptly took a nap.  Including Peter, me, Zach, Lucy, and even Grandpa Billy.

On Friday we went to Chef Jason’s for lunch and then showed our parents the rose garden and International Lilly Garden across the street. It was an ideal day with perfect weather and the flowers were out in full-bloom.

Zach’s parents left Saturday and my dad and Gayle planned on flying out of San Antonio and heading back to Alaska Sunday morning, but my dad decided to stay last minute and Gayle returned home. I am really glad he was able to stay a little longer. It has been so nice to have him here, and we really enjoyed and appreciated the help and company of all our family that has been able to come and visit us. (I cannot say thank you enough!)  It really helps to have an extra adult around to spend time and attention on Lucy while we settle down into a routine, and try to get life back to normal. 

Last night Peter celebrated another first, his first football game with Grandpa Billy! He didn't seem that interested in it, but Grandpa enjoyed it. Peter seems to be adjusting well to life at home with his family, and Lucy seems to be adjusting to the new arrangement as well.  She has a healthy curiosity about Peter, and I think as she continues to get over her sickness, and also becomes more comfortable around him, we will let her hold him and they will have a good time together.

I think the last I heard Peter had made it back to his birth weight? (although he bounces back and forth a lot on his weight- I know he is definitely at LEAST 5lbs) and seems to be a happy and content little guy. He rarely ever makes a sound, and when he does, it is little more than a peep.  Recently he has become adept at holding his pacifier in his mouth and sucking while he is being fed through his feeding tube. We might even get him to suck at the breast down the line, but probably will never be able to get him to the point where he will be able to actually breast feed. 

Tonight Zach and I had a Family Home Evening lesson with Peter about the Articles of Faith and explained to him what they said and meant. 

We also celebrated Peter’s second week birthday, which is a little bit of a milestone because the median life for a baby with Trisomy 18 is 14.5 days, so I feel good that he was able to make that mark.  Through this experience I have reflected on many aspects of life, and gleaned many insights. One of the things that I think about frequently is the small moments we have. Celebrating the small milestones, the small victories. 

I cherish my children and hope that Zach I can drink in as many tender moments with them as we can, as we celebrate every achievement and day that we can. 

Water Lily Garden

Peter dancing to Stayin' Alive

Peter's first football game with Grandpa Billy

Ready to go home!

Lucy is excited to welcome Peter home!

Happy two week birthday, Peter! 

Baby booties for Peter = galoshes. 

Baby Peter: Days 9-11 Update

by Tracy on Friday, October 14, 2011 at 1:06am

Day 11: October 13, 2011

Peter had his first bath! Finally! It only took a week and a day. On Tuesday I gave him a sponge bath with the guidance of one of the great nurses that is taking care of Peter.  He did not like his body being washed, but after being wrapped up in warm blankets, he really seemed to enjoy his head massage/head wash. I don’t blame him, my favorite part of getting my hair done is the shampoo/massage too. He was squeaky clean and has now transitioned into wearing clothes full time!

My dad and step-mom Gayle were able to fly down from Alaska on Tuesday to meet Peter and spend some time with our family. It was so wonderful to see them holding Peter and giving him love and affection. He is one loved baby. Both Zach’s parents and mine will be here until Saturday and I wish they all could stay longer, but am SO grateful that they have all been able to come meet Peter.  I only wish more family members and loved ones could have the opportunity to meet him before he passes from this life.

If no one meets your baby and then they die, it’s almost like they never existed. To outsiders it seems that you’re pregnant, and then you’re not, and nothing is different. You go back to how things were before. Mom, Dad, and Lucy. They never saw or met the baby, so it feels like nothing really changed from before you had them.

It’s important for me that Peter’s life is acknowledged and that his presence is felt, so I am very interested in family and loved ones having the opportunity to know him as much as possible.

On Wednesday we had the Bishop, my dad, and Zach’s dad give Peter a name and a blessing in the NICU.  Gayle, Kay, Lucy and I were there to listen as Zach gave the blessing (Kay and Lucy via cell phone from my hospital room because Lucy seemed to be getting a cold and we didn’t want her infecting any of the NICU babies). The nurses set up some privacy screens around Peter’s crib area and we were able to give him his blessing with relative privacy. I was so glad that my dad was able to be there for that special event in Peter’s (and my) life. I had really wanted him to be able to be there for Lucy’s blessing, but it didn’t work out and so had wanted to make it happen for our next child, whenever that would be. It really meant a lot to me that my dad could be there, and be a part of blessing his grandson.  I’ve really enjoyed sitting with them and talking as we take turns holding Peter, and having them over for dinners and playing games with Zach and his parents as well.  

Lucy has also really enjoyed having some of her grandparents here to visit and play with her. Nana and Grandpa Greg went to Walmart today and she had a fun time playing with a light-up bouncy ball and other toys in the kids section. The best part was that she played with the toys and then was done with them and Nana didn’t even have to buy them for her to enjoy them! (Which makes me happy because the last thing we need is more toys to fill up her play pen and toy box.) Lucy also had a fun time this evening dancing and singing to a song that grandpa Billy played on our “new” lap harp that Greg brought with them from Iowa. She makes me laugh every day, and I am glad that she is able to spend this time with her grandparents and make good memories and experiences with them.

We also had good news on Wednesday that Peter was probably as stable as he was going to get, and that we could start thinking about taking him home. They want us to do a dry run at the hospital in my room with Peter staying overnight with us so that they can make sure that we are ready to take care of him alone at home by ourselves. This involves giving him his feeding and medication at 6pm, feeding him every three hours after that, changing diapers, and checking his feeding tube placement and residuals in his stomach before every feeding.

We were supposed to do the dry run tonight, and bring Peter home tomorrow (Friday), but last night Lucy was sounding horrible and we ended up taking her to the ER to get her checked out. About 6 months ago she had croup and was hospitalized overnight, and this sounded similar, but even worse than she had six months before. The ER determined that she does have croup again, and Zach has a little bit of a cold as well, so the dry run and bringing Peter home has been postponed until she is well and Zach is feeling better. This is a disappointment to me, as I am now more than ready for Peter to be at home with us, and also wish that he could come home while our parents are still here in town to spend time with us.  Traveling back and forth to the hospital is wearing thin on me, and I long for the comforts of home and family. I don’t like to be apart from Zach and Lucy for such long periods of time, and I miss being at home with them. But the last thing we need is three sick people in the house, and we hope that Zach and Lucy both feel better and get well soon so that Peter can come home to us and complete our family.

Peter is currently at 1/8th on oxygen, at 100% concentration. His color has looked really good the past two days, and he is a calm and seemingly happy baby.  Here’s to a speedy and full recovery for Zach and Lucy, and a successful dry-run for Zach and me after that!

Happy to finally be able to give Peter a bath.

Peter upset at being wet and cold.

Peter loving his head massage/wash.

Family time.

Happy to be together.

Peter getting some help from Grandpa Billy.

Proud Parents/Grandparents

The Priesthood.

Peter looking adoringly at his Grandpa Billy.

Therapy During Catastrophic Illness

by Zachary on October 11, 2011 at 11:00pm

After much prompting from my wife, I decided to post this paper that I wrote for my counseling class.

--

October 11, 2011

            Ellen Pulleyblank Coffey wrote an article concerning family therapy during catastrophic illness. Her article discusses how to counsel with families during prognosis and illness. It also details death and moving forward. This subject has become especially interesting and in fact applicable to me in my life. My wife and I delivered our second child, Peter, October 3, 2011. Peter has been diagnosed with Trisomy 18, a genetic illness which has a median life expectancy of 14.5 days. It became apparent to me that many parents would need counseling if they were involved in similar situations. I was also interested in how to approach the subject if clients and therapists have differing spiritual views.

            Coffey first suggests different conversations that need to happen during the first stages of illness. Families need to carefully plan how they are to manage care, time and other resources during these illnesses. Families should learn to draw from larger community resources. Families should educate themselves and learn how to move forward through actions of medical treatment. The last conversation discusses the idea that often we may think of medical establishments having a responsibility to extend life for as long as possible. Depending on an individual’s spiritual beliefs and other considerations, there may be times when it is better to end life earlier to maintain better quality of life.

            The end of the article involves how families handle grief associated with terminal illnesses, the death event and moving forward. There are factors to consider when counseling with clients through this process, such as associated depression or denial. Children may have post traumatic stress and families may have a hard time rebuilding after the death of a loved one.

            I have been trained to be disciplined and level headed, but I have also been trained that there are stages of grief associated with any traumatic event. Throughout this first week of Peter’s life, I have shed many tears as I realized the severity of his illness. Friends and family have been very supportive; some even suggesting that he will overcome this. This could be a sign of denial or could be considered blissfully optimistic. My wife and I had many conversations regarding things we need to put in order while Peter is with us, and the steps we will take after he passes away.

My wife and I heard concerns during the first trimester that Peter had features of Trisomy 18. After consulting with a specialist over the next months, it was determined that he did not have this illness. We were taken by surprise at his birth when it was determined he had Trisomy 18. My wife and I consider ourselves lucky that we had some degree of time to emotionally prepare for this possibility. We also feel it was beneficial that we did not know the full prognosis as this would have added stress to the entire pregnancy. Some individuals may have harbored negative feelings towards doctors who give an inaccurate diagnosis, but I realize that medical science is not complete. Individual doctors and specialists are qualified and try to present the most accurate picture they can assess.

            My wife and I are Christians and this has certainly been our guiding support throughout this event. Specifically, the belief that Peter will be resurrected and reunited with us after we die is comforting to us. My wife and I ponder how people without such beliefs could find any comfort through an event such as this. Coffey suggests that therapists can discuss different spiritual beliefs with their clients. This was an interesting insight to me. I may have felt as if a therapist was to avoid “pushing” their spiritual beliefs. In fact they should be careful of that, but a therapist would do well to have a resource page that discusses many different beliefs regarding death. Clients could scan this information and find a belief that fits their worldview. Clients could then become actively involved in support groups.

            It is important to us that family and friends have been associated with this event. We discuss Peter’s status daily through newsletters and have had family travel some distance to see him. My wife said, “Family being here makes it seem like Peter is real.” As one can imagine, these traumatic events can shake concepts of reality and mortality. Understanding personal needs is crucial as families move forward in these circumstances.

            There are many lessons that can be learned from an event like this, such as developing spiritual concepts, understanding personal and family needs, discussing difficult situations effectively and working with medical professionals. It is also important for individuals to understand when to reach out to friends and communities for help. Capable families may feel like they can handle circumstances on their own, but there is a binding and satisfying experience that comes from giving and receiving service. This experience has helped me understand how to counsel with individuals experiencing grief and a hard time. My wife and I are nearing a time when we would be “ready” for Peter to pass on. We enjoy each day we have with him and will continue to enjoy them as long as he decides to stay here on earth. 

Baby Peter: Days 7-8 Update

by Tracy on Tuesday, October 11, 2011 at 2:08am

Happy Birthday, Peter! 

Peter is one week old today, and we have loved every minute spent with him. I spent a glorious afternoon with him sleeping on my chest in the NICU as I laid in a recliner and we took a nap together. Heaven.  Nothing is sweeter than having your precious baby’s head right under your chin to rub up against and feel their little heart beat against your own chest. It’s a moment I want to remember forever. 

Peter got his first piece of mail! Unfortunately, it was an unexciting letter from our insurance company about his approved health care and treatments.  But Peter was still excited and proud of his little letter. 

Zach and I had a little birthday celebration with Peter this evening, and then had a Family Home Evening lesson about obedience together (one of my favorite principles). I took the opportunity to teach him my favorite hymn, I Stand All Amazed, and we sang it as our opening song. 

Peter is eating, almost exclusively, pumped breast milk with extra calories mixed in. They switched him from a feeding tube that they changed daily to a longer-lasting tube that they change monthly. They have also moved the patches that hold his nasal canula in place to farther down on his face so that the tubes don't push in his nose as much. He was at 5lbs exactly this morning, and is at 1 litre on oxygen. Go, Peter! They are still giving him lasix, which they attribute his great progress to. 

They are continually lowering the amount of oxygen they are giving him in an effort to wean him off it enough for us to be able to take him home.  The oxygen equipment the hospital uses has a much higher capacity than the one that Peter would be using through hospice at home, so they need him to get to the range that the hospice equipment is at. 

Taking him home: this might sound great, but initially when the topic of taking him home with the help of hospice care came up on the second day after he was born, I was really scared of the thought.  First of all, the idea of putting him down for a nap at home, and then coming back to get him up and finding him dead was a thought and experience I could not handle emotionally. Being the one solely responsible for his care and life was something I was not yet ready to handle.  The nurses and doctors here in the NICU are 100% trained and capable of caring for him perfectly and knowing how to respond to an emergency, and even if they teach me how to change his feeding tube, mix his milk and feed him, or how to respond to a serious problem, there is just no substitute for a trained professional in the event of an emergency. They can teach me all they want, but in the heat of the moment, panic can erase all previous knowledge. 

The other day we met with the hospice worker to learn more about the program. I had heard of hospice, but didn’t really know anything about what is was exactly, or what they did. She has previous experience caring for several children with Trisomy 18 (which is very reassuring), and is a trained nurse who does hospice care for infants and children. She explained that if we decided to use hospice, she would help us adjust to taking care of Peter at home, give us additional training on caring for Peter, and would be available to call and have come over any time, day or night. This alone was a huge relief to hear. Being alone in a crisis situation is a huge fear of mine, so I was glad to hear that trained help would be available whenever needed. The hospice worker is available to come over as much as the parents need, once a week, several days a week, etc. There are also volunteers who usually have had a loved one in hospice care themselves in the past, who are willing to come over to help out at home, run errands, etc.  The focus of hospice care is to help individuals who are terminally ill to be as comfortable as possible in their own homes as they progress towards death. There are some differences in infant and geriatric care in the sense that they allow more to be done for babies.  The focus is on making them comfortable though, not trying to prolong their lives, so if parents have their child on hospice and then decide that they want their baby to have heart surgery to fix their heart problems, then they are kicked off hospice care. Basically, it is only for people who are ready to let nature take it’s course, with minimal interventions. That being said, it’s not like they unplug the baby’s air, stop feeding him, and let him die. From my understanding insurance covers the cost of hospice care. 

I also had some concerns about taking care of Peter and also being able to meet Lucy’s needs.  Our doctor pointed out that taking care of Peter would not be a whole lot different than if I was taking care of a healthy baby and Lucy. Duh. When he said that, it really put it into perspective. Peter sleeps a lot, has his dirty diapers, eats every 3 hours, and that’s pretty much it. He doesn’t demand a lot of attention, and doesn’t have many extra needs. A healthy baby would probably do those same things and also cry a lot. Peter is as quiet as a mouse. The only extra work would be me pumping milk and feeding him (which is 15 minutes of pumping every three hours, and only a few minutes for him to eat), and keeping a watchful eye on his feeding tube and breathing. His lasix is given orally through his feeding tube, we would have to change his tube periodically (or have the hospice worker do it if neither of us is comfortable doing it), and that is pretty much it when it comes to extra care. I would say the main difference will be that caring for Peter vs. caring for a healthy baby is that it will be significantly more taxing emotionally. There is a lot more stress and heartache involved in this scenario, which I anticipate will be draining emotionally as well as physically, but hopefully will not significantly hinder me taking care of Lucy’s needs as well. Not to mention, that I have to maintain my relationship with Zach and work on making sure we continue to grow closer together though this experience, and not farther apart. So far, so good. I don’t anticipate that being too much of a problem, as Zach has been wonderful and completely supportive as we both deal with this heartbreaking situation and spend as much time as possible making happy memories with our beautiful family. 

After talking to the hospice worker, I felt a LOT better about the idea of taking Peter home and caring for him ourselves.  I am not 100% ready to take him home today, but I am a whole lot closer, and I feel confident that when Peter gets to the point that he is eligible to come home, I will be ready and eager to take him home.  

Happy birthday, my sweetheart. 

Happy One Week Birthday!!

Peter's first letter! Exciting insurance information.

Hanging out, while his diaper is slipping off his tiny bottom.

A memory of heaven. Right before we both took a nap with Peter resting on my chest.

Dad telling Peter a hilarious story about Nana Kay.

Family Home Evening.

Baby Peter: Day 6 Update

by Tracy on Sunday, October 9, 2011 at 3:17am

After discussing it with Peter’s doctor, talking about it together, and praying about it, Zach and I have decided not to pursue any surgeries for Peter. While it might extend his life a little longer, it would not solve the main problems, and would be a strain on his tiny body, cause him pain, and he might not even survive the surgery. Our focus right now is making Peter’s remaining time with us as happy and comfortable as possible.  We are still waiting for the final genetics test results, and won’t expect them until after the weekend.

Yesterday, Friday October 7th, at around 6pm they took out my belly staples, gave me a flu shot, and I was officially discharged from the hospital.  My sutures look great, and I seem to be healing nicely, although walking for any length of time makes my lower abdomen start to burn significantly and I have to find a resting place immediately.

After being discharged I went to say goodnight to Peter and let him know that I wouldn’t be visiting him that night, and would see him the next day. It was so hard to say goodbye for the night and leave him! Zach and his dad, Greg, picked me up and we went home for the night. As I was leaving the hospital I became very emotional and sad as I thought about having to leave the hospital without him.  You just don’t imagine a scenario where you are leaving to go home, and you don’t have your precious baby with you.

 I missed having my midnight visit with Peter and it was hard to not feel a little guilty about leaving, but I also knew that I needed to rest and take care of some other things at home, which included being a mother to Lucy and spending time with Zach outside the stress of the hospital.

I spent some much needed time at home with Lucy, showered with actual water pressure, and slept in my king-sized memory foam bed. It felt so great.  My body was still exhausted from delivery and the stress of the week. It was really good to be home in comfortable surroundings and just relax, catch up on sleep, and spend some time with family and friends. We had Matt and Crystal (and their baby) over to play a few games with us and Zach’s parents. It was fun and the whole evening was just a nice distraction from reality. There were moments where I actually forgot what was really happening in our lives right now. It felt good to just have a break.

 This morning Zach’s mom, Kay, took care of Lucy so we both got to catch up on rest and sleep in. I so needed it.  We spent the morning slowly getting ready for the day and Kay made us eggs and bacon before we headed back to the hospital at 2pm. Fortunately the hospital was able to allow us to Room-in, which means that they let us use an extra room they have so that I don’t have to drive back and forth as much, which makes it easier to provide breast milk for Peter and spend as much time with him as possible. What a blessing!   I am no longer a patient so they don’t give me my medications anymore, don’t bring meals to my room, and don’t come and check up on my needs.  They do provide me with free meal vouchers for three meals a day while I am at the hospital. We want to make the most of the time Peter has with us here on Earth, and the hospital has been wonderful in helping us make that happen. We can come and go as we please, and use the room as a home-base.   We can spend the night in there when we want, or just spend the day at the hospital, and go home at night.

I am back at the hospital now and plan on spending the night here and all day tomorrow.  We really just take it a day at a time when it comes to planning who will be where and what we will be doing.

Peter has actually been making some progress. He started out at a 6 for oxygen, and the doctor has been slowly decreasing it the past two days. Peter is currently at 2.5 and has shown no problems as they have made each adjustment to his level of oxygen. They attempted weaning him from the oxygen a few days ago and had to put it back up because he did not respond well to it, so it is encouraging that he is doing so well this time around. Part of the reason he is adjusting better to each reduction of oxygen is the lasix he has been taking, which helps eliminate moisture in his body and helps him breathe easier.

When I came back in to the hospital this afternoon his doctor checked in with me and gave me an update on last night and this morning. Peter gained an ounce last night! :D I was very happy to hear that. They are also continuing increasing his feedings, and have switched to a lower amount of fluid with a higher concentration of calories so that he burns less calories eating and also to keep the amount of fluid in his body low. Greg, Kay, Zach, Lucy and I were all able to visit Peter today, and Lucy even patted him and gave him kisses on his forehead. It was wonderful to see her being affectionate with her baby brother and showing him love.

This evening Zach and I spent time with Peter telling him all about ourselves, and his big sister, Lucy. Zach has also been teaching him the gospel and missionary discussions, and we sang primary songs to him together. It is really touching to share these precious moments with him, and share the things that are important to us- the things we wish we could spend years teaching him and telling him about.  Even though right now he probably remembers and knows more about these topics than we could ever teach him, it is nice to be able to tell him our feelings about them.

We talked about gaining a physical body, Jesus Christ and the resurrection, the temple covenants Zach and I made, eternal families and him being sealed to us forever and how we will never do anything to jeopardize that. We promised him that we will stay true to our covenants so that the promised blessing of an eternal family will always remain in force, and he will be ours forever.

Peter’s sweet spirit has filled our family with love and we count ourselves extremely blessed and lucky to have him as a part of our family. 

Peter holding onto Mom.

Lucy going in for the kiss, Peter anticipating it.

Dad saying goodbye for the night before heading home.

Peter and Dad share a tender moment.

Peter's Update: Day 4

by Zachary on Friday, October 7, 2011 at 12:27am

Today, Tracy and I received results back from the FISH test, which suggested Peter does have Trisomy 18. The full genetics test may come back as early as tomorrow and will verify the details. The median life expectancy for Trisomy 18 is 14.5 days. Few live longer than a year, and those that do live longer, do not have the heart and lung complications that Peter has.

We're enjoying each day with him and he seems happy and comfortable. He still has a feeding tube and is on oxygen to help him breathe. The doctors have also given him Lasix to help remove excess fluid from his lungs. There are some surgeries that could help extend his life for a little longer, but would also be strenuous on his body. It is also possible that we could bring him home with hospice care. There are many decisions that Tracy and I continue to pray about to help Peter be as comfortable and healthy as possible.

My parents arrived today and will stay for about 10 days. We were able to take family pictures with Peter, Lucy, Tracy, my parents and I. We're so happy my parents could meet Peter and spend time with us. Pictures will be uploaded shortly on Tracy's facebook page and there will likely be many more to follow! :)

We have had great support from our friends from church and the military. The hospital staff has also been so helpful. Thank you all for your thoughts and prayers. I have certainly felt many prayers ascending to heaven and blessing our lives. Never feel like your prayers have not been answered or have been in vain. Family's are central to our Heavenly Father's plan for His children. Jesus Christ is our Savior and Redeemer and because of him, we will all be resurrected. We look forward to Peter's company when that time comes and we look forward to enjoying all of the blessings our Heavenly Father has in store for our family.

Our Beautiful Family

Lucy's first look.

Lucy's first hold- apprehensive at first.

Grandma Kay's first hold.

Peter's namesake- Grandpa Gregory Allen's first hold.

So much love!

Family.

Angels on Earth.

My love.