Thursday, January 31, 2008

Tristan's Celebration of Life service

I had so much fun day-after-day for 56 days giving updates of Tristan's life and now it's really hard because I really, really miss him sitting beside me(in his bouncy seat) as I type - it was so easy then! Now, I sit here tonight, in the same chair, at the same desk, staring at the same computer, typing on the same keyboard - everything is the same and yet it's not, it's so different now and I am so numb, I feel like a huge part of me is gone! When I was getting ready for the service yesterday morning I was thinking about how fast this journey has gone, like it was just yesterday that we found out we were pregnant and yet "just yesterday" we were attending a service to honor and remember the 56 days of miracles we shared with our precious little boy. Not only am I feeling the emotional pain but I am also beginning to feel the physical exhaustion, not just from the past 3 days but from the past 56 days. I remember so many nights I would hold Tristan and I could barely stay awake and Trayc would tell me that I really needed to get some sleep but I'd always say, "It's okay, I'll have time to sleep one day when Tristan is no longer with us, but today he's here so I'll stay awake" - oh I'd give anything for another sleepless night! However, as tired as I am I really wanted to share with everyone who was not able to attend the service what it was like so that you could feel a part of the service as you are also the ones who have traveled this journey with us from afar.

Tristan's "Celebration of Life" service was absolutely beautiful, it was everything we wanted it to be. Our desire was for the service to be soft and sweet and one that would reflect the love we shared as a FAMILY OF 5 and the memories we made with our precious little boy every day, for 56 days! And, ultimately we wanted the service to bring honor and glory to the Lord for choosing Trayc and I to be Tristan's parents, for this being His plan for our family and for carrying our family every step of the way while on this Trisomy 18 journey.

The visitation began at 11:00 am and one-by-one over 200 guests entered our church. We were overwhelmed with the number of people who came on behalf of our little boy. Some were sweet friends we are close to, some were friends from our past, some were church staff members, some were Sunday School teachers from our high school years, some were in our Sunday School class and a few were people who only knew of us from the blog, they came to say thank you for sharing our journey on the internet. We cannot even begin to express how much each person's presence meant to us, we felt so much love. Each guest walked down the aisle of the church to meet us and express their sympathies in the loss of Tristan and thanked us for being willing to share our journey with the world. Then they were able to walk by the little white casket that held our precious little boy and then look at an 8 ft. table, which my mom helped me set up, which displayed mementos that represented the past 56 days such as Tristan's Christmas tree the boys made, the Christmas card he gave me, the outfit/hat he wore home from the hospital, the Bible he received at the baby dedication, the birthday hat/candle from the party we had with the nurses, the New Years hat/whistle and the list goes on.

The service began at 12:00 noon with the pastor opening in prayer, we played a slideshow which showed 115 pictures (we took 1,600 in 56 days) and then Amy Henning (from the group Evidence) sang the song she wrote "Open the Sea" which as you all know from a previous entry has become my life song while on this journey (this was not previously planned - this was a huge surprise when we found out she was coming in just for us - thank you, Amy!). Then my sweet husband, through lots of tears and emotion, spoke the sweetest words I've ever heard on behalf of our family and in thanksgiving to the Lord for allowing us 56 days and for choosing us to be Tristan's parents. Then the pastor delivered an incredible message.

At 1:15 pm, all of our family members left the church escorted by 4 motorcycle policeman (who volunteered their services/time for free on behalf of our son - thank you!) and drove to the cemetery where our pastor again said a few words. We ended the service, as Tanner had requested, by each of us letting go of a blue balloon to represent Trayc, Tanner, Tayden and I and then Trayc released one white balloon representing Tristan. We left the cemetery and went back to my parents house where both of our families joined us for lunch(provided by my parents' friends - thank you!) and a sweet time of sharing.

It was a very special day of celebration as we remembered the 56 days of miracles we shared with our little boy, Tristan Asher Hostetter.

Psalm 127:3 says: "Sons are a heritage from the Lord, children a reward from him."

Wednesday, January 30, 2008

What happend on Sunday?

Thank you so much to everyone who has commented on our blog or personally emailed us since since Sunday night. I cannot begin to tell you how much we truly appreciate the outpouring of love, support and prayers for our family during the loss of our precious little boy, Tristan. As I mentioned in my entry on Monday, this was so unexpected....and yet it wasn't. When you receive a diagnosis of Trisomy 18 you are told the statistics, you know the reality which is why our only prayer was for Tristan to be born alive and have at least one day with us - he was! As the days went by we started praying that we could take him home from the hospital - we did! Then day-by-day we loved Tristan with all of our heart and held nothing back. We had 56 days of miracles - so much more than we ever prayed for or even believed was possible. We celebrated every day whether it was Christmas every night in December, visiting Santa Claus, celebrating his 1st Christmas Eve, celebrating his 1st Christmas, having him dedicated at our church, celebrating his 1st New Year's Eve, celebrating his 1st New Year's Day, Disney night, Jaguar football night, bath nights or nightly "dress ups" with all 3 boys taking picture after picture - we lived in the moment and lived every day to the fullest!!!!

I know so many of you were wondering what happened on Sunday prior to Tristan passing away, as we've had many comments saying they were shocked. Let me start off by saying, we were absolutely shocked. Tristan had a great night Saturday night, his apnea monitor did not got off, his color was perfect, he took all 25 ml of feeding every 3 hours and the normal reflux that caused drool/formula to run down his mouth. I stayed awake from 10:30pm-2:00am watching him and wiping his little mouth, we switched sides and Trayc watched him from 2:00am-8:00am and then we both slept until 10:00am. We got up, ate breakfast, watched our church on TV and then Trayc said we needed groceries. He said, "Why don't you go get groceries and I'll stay here" so I took Tanner and we left at 2:15 pm. I spoke with Trayc several times while we were gone and every time asked (as always) if Tristan was okay and he said yes, he was fine. Trayc called me at 4:15 pm and asked if I was heading home and I told him I was checking out and he said, "okay I'll see you in a few minutes". At 4:20 pm while Trayc was changing Tayden's diaper the apnea monitor alarmed so Trayc left Tayden on the bed, checked Tristan and he was breathing again. He went back to Tayden's room to finish changing his diaper and the monitor alarmed again so he went in there and it was the heart monitor - THIS HAS NEVER, EVER HAPPENED!!!!! Trayc picked Tristan up and laid him on the bed and quickly undressed him to try and stimulate him and turned up the oxygen all the way to 5, but he was just very relaxed and the heart monitor continued alarming. Trayc called me and said "Where are you!" I said, "I'm on my way home" He said, "I need you to get home fast" I said, "Why?" He said, "He's not good baby, he's going fast!" I said, "What do you mean?" He said, "Baby just get home fast". I had been on the phone with my mom when he called so I clicked back to tell her and I was crying so hard. I didn't know how this was possible, I had just left at 2:15 pm, what could have changed in 2 hours? Of course, I hit every red light. My mom kept talking and praying with me all the way home (while at the same time getting my step-dad so they could come over). For 15 minutes Trayc held Tristan and kept telling him to hold on mommy was on her way. At 4:35 pm Tanner and I ran in the door, ran upstairs and Trayc handed him to me and said, "Baby tell him everything you want to, he's going fast". All 3 of us sat on the bed crying and I was looking in Tristan's eyes telling him how much I loved him, how happy I was to be his mommy, how I would never forget him, how all of his friends were waiting on him and I named them (Poppy Joy, Maddox and Mary Grace) and then Tanner said, "I love you buddy, you were the best little brother, I loved being your big brother, I will never forget you, I promise". I continued telling Tristan over and over how much I loved him until he took his last breath and went from my arms to Jesus arms at 4:40 pm. We sat on the bed for 20 minutes loving and kissing Tristan.

My parents were fixing to be here so as we started to walk downstairs I handed Tristan to Trayc and said, "I need to do a post and tell everyone so they can be praying for us". I sat down and through many tears quickly typed the entry called "Tristan went home to be with Jesus". Those were truly the hardest words I have ever typed as I am so used to typing cute little, creative titles - I just wanted to get the word out to the world that our little boy was gone and we desperately needed prayer! Within 15 minutes my parents, my sister's family and my grandparents were here (I'm so thankful we all live close). Then my sister took Tanner and Tayden so they could spend the night with her so they could be with their cousins and would not feel and see the pain we were experiencing, Tanner's been through so much since August and this part we wanted to shelter him from. Then our sweet pastor and his wife came and had prayer and talked with us all. He was reminding us that Tristan was in heaven from the moment he closed his eyes, he was in the presence of the Lord, that this body is what we hold on to and cling to because it's what we know and love but he's not there and then he shared some scripture. Being in church 3xs a week my entire life I've heard those words but NEVER needed to hear them like I did at that moment, it brought on a whole new meaning now that our little boy was in heaven. Everyone left but my parents, they stayed until the funeral home left.

It was around 11:00 pm when Trayc and I finally crawled into bed. We held on to Tristan's blue blanket and his little doggie (the one in all the pictures) and laid in each other's arms crying. It was so dark (we were used to the night stand light on) and it was so quite (Tanner and Tayden were with my sister and the oxygen concentrator wasn't on). Trayc got up and turned on the bathroom light and turned on the fan to the heater. We talked until 3:30 am about how in shock we were as there were no signs of this day coming, about our pregnancy, about the past 56 days, how we see clearly see the Lord's hand on our family since we began this T-18 journey in August and how we are so grateful to have been given more days than we ever imagined possible. We experienced 56 days of miracles!!!!!!!

I would ask that you please remember our family in prayer in the days ahead, they are extremely hard right now, although we knew Tristan's days were numbered from the beginning, I did not know it was possible to feel this great of a loss after sharing 56 days. We miss our little boy so much but fortunately we are not without hope, we know we will see him again.

John 11:4 says: "...This sickness is not unto death, but for the glory of God, that the Son of God may be glorified thereby."

Tuesday, January 29, 2008

Totally unexpected......and yet it wasn't!

Thank you to everyone who has commented on our blog since Sunday. We are overwhelmed with the amount of prayers and support for our family in the loss of our sweet, precious little boy, Tristan. They are being felt and are such an encouragement to us as we are being faced with the saddest and most difficult days of our lives. We are okay though and so is Tanner. We will post a more detailed account of what happened on Sunday in the next few days as we have been so busy with plans the past 2 days.

How do I say this was totally unexpected and yet it wasn't. Tristan has been doing so good and had a great day on Sunday right up until 4:20 when his apnea monitor went off and then seconds later his heart monitor went off - THE HEART MONITOR HAS NEVER GONE OFF BEFORE!!! He went down quickly from there. I was on my way home from the store (15 min. away) and got home at 4:35 pm, Trayc handed Tristan to me and he passed away a mere 5 minutes later at 4:40 pm. Straight from my arms to Jesus arms.

Please continue to keep us in your prayers as we have the "Celebration of Life" service for our little boy - We had 56 precious days!!!

We love you all,
The Hostetter Family

Monday, January 28, 2008

Celebration of Life information

This is the information regarding Tristan's "Celebration of Life" service:

Wednesday, January 30, 2008
11:00 am Family will be receiving guests
12:00 noon Celebration of Life service


First Baptist Church Downtown
Hobson Auditorium
124 West Ashley Street
Jacksonville, Florida 32202
(904)356-6077


In lieu of flowers we ask that you donate to the Preschool Building renovation project, in honor of Tristan Asher Hostetter. Mail checks to: First Baptist Church, Attn: Finance Dept., 124 West Ashley Street, Jacksonville, Florida 32202 (on memo line write: Preschool Bldg. Renovation-honor of Tristan Hostetter).

Sunday, January 27, 2008

Day 56 - Tristan went home to be with Jesus

It's 5:00 pm here in Jacksonville, Florida and just wanted everyone to be praying for us. Tristan had a great night last night and today, however around 4:20 pm he started going down very quickly and passed away at 4:40 pm.

PLEASE PLEASE PLEASE pray for us. Our family members are on their way!!

Saturday, January 26, 2008

Day 55 - Too cold to get out!

Tristan had another great night sleep! His apnea monitor did not go off and his color did not change but we are still having to watch him when he eats because his reflux causes some of the formula to come up so I don't want him having that run down the sides of his little mouth so we watch him so we can keep wiping it off. I stayed up from 10:30 pm-1:45 am and Trayc took the shift from 1:45am-6:00 am. What honor we feel that the Lord has allowed us the opportunity to have such sleepless nights! Tristan is definitely handling the increased feedings which is great, he needs to be at 27 ml by Wednesday per his Nutritionist.

Today we really didn't do much, just had a relaxing day as a family around the house. I am really desiring to take Tristan out in public and start doing things as a family of 5 now that he's doing so good and because we've made it to Day 55. If anything, I'd at least like to return back to church on Sunday mornings. It's been cold here so we won't go tomorrow because we certainly don't want to risk him getting sick especially with the doctors appts. and possible surgeries coming up. So, we'll wait until the weather gets a little warmer and until then we'll keep coming up with creative ideas to do at home with him - which is really more fun than going out anyway, especially for Tanner and Tayden.

As you know we have 2 big appts. on Monday and Tuesday. On Monday, we meet with the Ped-Surgeon regarding Tristan's hernias and possible G tube. On Tuesday, Tristan has an upper GI done to confirm the reflux so that we can change his medicine to something a little stronger. We may have a lot of decisions to make this week which I am very scared about because I am not comfortable with the idea of Tristan going under sedation. However, I also do not want us to be in a situation where we have to go to the Emergency Room because the hernias have ruptured. I am hoping that the Ped-Surgeon does not feel as though the hernias are a problem right now and that we could wait a little longer until Tristan is older and has gained some more weight.

Please pray for Tristan's strength, please pray for us as we may be faced with several medical decisions in the next 2 days and please pray for us as we face another new day tomorrow.

Friday, January 25, 2008

Day 54 - Change in destinations

Tristan had a great night sleep! He was not fussy, his apnea monitor did not go off at all and he was able to handle the increased formula amount from 24 ml to 25 ml without any problem. Tristan had a good day except that his reflux has become more obvious - he is now spitting up formula because he does not know how to swallow, so he cries when this happens which means we watch him the entire time he feeds now, we'll know more about his reflux after the upper GI test next week.

Today I was FINALLY taking a shower at 1:00 pm and I was thinking about how my life as Tanner, Tayden and Tristan's mommy has changed me. As I've written in previous post this is not what Trayc and I had planned when we got married 17 yrs ago. We wanted 4 children, 2 years apart, 2 boys, 2 girls - this was the plan! However, as you can see, this was not the Lord's plan for us, He blessed us with 3 boys. I thought to myself "Would I change the way my life is today?" Honestly, the answer is yes and no (I mean who wouldn't want to change some things in their life, right?). Yes, I wish I had the 4 children we so desperately want, Yes I wish we had at least one little girl I could dress up in all pink and go to ballet recitals with, Yes I wish Tanner and Tayden were closer in age, Yes I wish Tristan did not have T-18. But, at the same time my answer is no, I would not change the way my life is today, there is a reason why the Lord has given us each one our boys and I don't want to miss out on the blessings He has in store for us. Tanner, Tayden and Tristan are all truly miracle babies as we were told my 9 doctors and 1 infertility specialist that we would never have children - yet we do, we have 3! And then we've been given another miracle, we get to wake up every morning and look at our precious little boy, Tristan, the one doctors told us probably would not survive until December and the one they considered "incompatible with life" - yet we are on Day 54! Being Tristan's mommy has allowed me to do things I would never have had the chance to do had he not been diagnosed with Trisomy 18. Because of his diagnosis I took my personal journal and turned it into this blog which has given me the opportunity to meet people all over the world and ask them to pray for us, it has allowed me the unique opportunity to form "Internet" friendships with some of the sweetest Christian girls I've ever known and walk this road with them, it has drawn me closer to the Lord, it has caused me to have a more consistent quiet time as I daily seek the scriptures, it has caused me to spend my days praying not only for us but for every girl I've met on this journey, it has given me the opportunity to witness to everyone we come in contact with, it has caused 1000's of people in our church to pray for our little boy, it has given me a desire to begin a ministry for hurting moms of T-18 babies in the future, and most of all, it has allowed us to so vividly see how the Lord has placed His hands over our family. Being Tayden's mommy has, wow where do I begin, taken all of the seriousness out of the "quiet, peaceful, organized, perfect" life we once knew - he is silly, crazy, wild but at the same time so sweet, loving, a mommy's boy and he keeps us laughing even in the difficult times which is exactly what we need. Being Tanner's mommy allowed me to hear the words "mama" for the first time 11 yrs ago, it slowed me down from the fast-paced 8-5 working world I lived, for 16 years as a legal assistant, and it has taught me how to get down on the floor and do boy things like play with trucks, cars, play station and get out in the heat to watch him play soccer (I'm a girlie-girl so this is all a big deal). All 3 of my boys have changed me in different ways and in more ways than I even have the time to tell about and although it wasn't what we had planned it is exactly what the Lord's plan was for our family therefore I wouldn't change a thing. Even with all of the uncertainties of Tristan's little life - this is the MOST INCREDIBLE TIME OF MY LIFE.

Below is a poem I read on the Internet months ago and it came to mind today when I was thinking about my life as Tristan's mommy. After you read it you will understand why I proudly say I am enjoying Holland, I am so glad the destination changed because I wouldn't want to be in Italy, as we had originally planned!

Please pray for Tristan's strength, please pray for the 2 heart meds to work, please pray for the reflux to subside and please pray for us as we face another new day tomorrow.


"Welcome to Holland"

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss. But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

(Written by Emily Pearl Kingsley in 1987, to help others understand what it is like to raise and take care of a special-needs child)

Thursday, January 24, 2008

Day 53 - Puppy Love



Tristan slept really good until 3:00 am when he decided to stay WIDE AWAKE from 3:00-6:00 am! He wasn't fussing or crying, just awake, but when he is awake I want to make sure I am right there - in his face - rubbing his head, talking to him, praying with him and kissing on him. Because his heart is working so much harder now, he sleeps quite a bit so I want to make sure I don't miss a minute when he's awake because I never know when the last night might be that I am able to do this, even though it makes for a very tired mommy the next morning! Tristan had a good day today, we upped his feeding from 24 ml to 25 ml and he is tolerating the increase so far which is great because we really need to get him to 27 ml by Wednesday per the nutritionist, she has him on a weight gaining plan.

I realize I've given a lot of information about Tristan's health the last few days so I decided to post on the lighter side. Tanner and I went to the outlet mall tonight and Tanner picked out the outfit Tristan is wearing. It is so cute, it has puppies all over it and the footies have puppy faces on them. Tanner could not wait to get home and dress Tristan in it and have his picture taken with him and the puppy Tanner gave Tristan when he was born. It was the perfect time for pictures because Trayc had just removed the feeding tube and I just love seeing his little lips, we don't get to see them much because of all the tape. It is so sweet when we talk to him, he moves his lips around and makes sounds like he's trying to talk back (see the top picture).

Please pray for Tristan's strength, please pray for Trayc and I as we make decisions regarding Tristan's future medical care and please pray for us as we face another new day tomorrow.

Wednesday, January 23, 2008

Day 52 - God will direct us

Tristan had another great night sleep. His apnea monitor didn't go off and his color did not change. Today we were off to an early start for Tristan's 2nd appt. with the cardiologist at 8:00 am. At the appt. last week, we had heart tests performed and found out that the hole in Tristan's heart was much larger than we were told back in August from the high-risk doctors. It completely took us by surprise so we couldn't think about much more than that, however we've had a week to watch Tristan and think about questions for the cardiologist so today we went in with a long list. Let me say again, the Lord absolutely picked this cardiologist for us! She is so sweet, very understanding of our situation, sees Tristan has a heart patient and is willing to operate regardless of the T-18 and she is definitely a go-getter. Her office was on the phone contacting our pediatrician about scheduling appts. with 2 other doctors before we even left the office. Basically, this is where we are right now with Tristan's health concerns:

Tristan's reflux: Tristan is having an Upper GI test done next week to assess his stomach to confirm that he is having reflux and to make sure his stomach is not twisted. If it is not twisted then another kind of reflux medicine will be prescribed, the Zantac is not working.

Tristan's 2 hernias: One is small and one is very large. The cardiologist is concerned that it would turn blue, rupture, cause a lot of pain, infection would set in and he would pass away due to this problem alone, so she is referring us to a Ped-surgeon.

Tristan's feeding tube: Tristan's ability to suck/swallow is going very slow, infact because his little heart is beating so hard he doesn't even take his pacifier anymore, it's too much effort for him. The cardiologist wants us to hold off on the speech therapy appts until Tristan gets a little stronger. The cardiologist would like a G tube to be put in at the same time as the hernia surgery, if we opt to do the surgery, as the OG tube will become an irritant to Tristan's throat which will cause him pain.

Tristan's heart: He has a very large VSD hole. The cardiologist will keep him on the same heart medicine, just up the dose to 2 xs a day, hoping this will work until he is strong enough to have a band put around his artery which would allow the blood to flow the right direction and then we would not need to have invasive heart surgery.

Tristan's color change: This is the oxygen saturation levels going back and forth so when they drop his color changes to gray/blue. The doctor said this will continue to happen until the heart band surgery is done.

Tristan's weight: Good news - he gained 2 more ounces!!!!! He is now at 4 lbs. 3 oz., only one more oz. until he's back at his birth weight. The nutritionist has upped his formula intake now to 24 ml but will slowly up it to 27 ml by next Wednesday.


As you can see from above, after the appts next week we may need to make decisions about having the hernias repaired and if that is done the surgeon would also do the G tube surgery at the same time. When we were pregnant we had to make some very difficult decisions prior to Tristan's birth as to what we wanted medically done, this was so hard I mean how do you chose medical procedures that may or may not save your baby? We made the decisions we felt the Lord led us to make and he has allowed Tristan to live and we have been blessed with the sweetest 52 days! Now, here we are possibly facing more medical decisions for Tristan. The decision to have surgeries would mean he would be under anesthesia and be required to stay in the hospital for a few days. First, I'm scared about the anesthesia part because my heart is crying "what if we do this and he doesn't make it, I want him in my arms when he passes away not in an OR without me" and second, I do not want him to stay in the hospital, I want him in his bassinet right next to my side of the bed so I can hold his little hand all night, like I always do. I realized how fortunate we have been with our other 2 boys because we've never had to be in a hospital so the idea of a hospital stay for my precious little boy who is already so fragile concerns me, scares me, worries me, etc. We will meet with the surgeon next week and my prayer is that the hernias are not so bad that they require surgery, however at the same time I do not want to put ourselves in a situation where it's not scheduled surgery and the hernia ruptures and we have to go to the emergency room and have unscheduled surgery with a doctor we do not know - herein lies the dilemma. Since we found out Tristan had T-18 in August we have felt the Lord 's hand on our lives, on our family and our precious little boy in a very real way and we know that He will continue to direct/guide us in every decision we will need to make in the upcoming days.

Please pray for Tristan's strength, please pray for us as we attend the appts. next week, please pray that the Lord's direction will be evidently clear to us and please pray for us as we face another new day tomorrow.

Psalm 37:23-24 says: "If the Lord delights in a mans ways, he makes his steps firm; though he stumble, he will not fall, for the Lord upholds him with his hand."

Proverbs 16:9 says: "In his heart a man plans his course, but the Lord determines(directs) his steps."
  • God will direct us through His Word: Colossians 3:16 says: "Let the word of Christ dwell in you richly in all wisdom."
  • God will direct us through prayer and listening: John 10:27 says: "My sheep listen to my voice, I know them and they follow me." and Isaiah 30:21 says: "Whether you turn right or to the left, your ears will hear a voice behind you, saying This is the way; walk in it."
  • God will direct us through seeking wise counsel: Hebrews 13:7 says: "Remember your leaders who spoke the word of God to you. Consider the outcome of their way of life and imitate their faith." and Proverbs 12:15 says: "The way of a fool seems right to him, but a wise man listens to advice."

Tuesday, January 22, 2008

Day 51 - Praying for my friend, Kenzie

Tristan had a great night sleep last night. He was not fussy, his color did not change and his apnea monitor did not go off at all - it was a great night! Thank you to everyone who lifted Tristan's name up in prayer last night and today as we had requested on our blog, yesterday (Day 50) and thank you to everyone who left a comment or who personally emailed us, we feel so loved not only by people we know but from people we've never met.

I will be honest, tonight my mind is flooded with thoughts for my sweet friend, Kenzie, as we were just in the hospital 51 days ago awaiting the birth of Tristan and not knowing what the future would hold, so I completely understand every feeling and emotion she is experiencing tonight. Kenzie and I have been "Internet" friends and emailed back and forth for months and I had the opportunity to personally speak with her on the phone Friday night for 2 hrs. It was such a sweet conversation, the Lord has truly blessed me with some very special "Internet" friends along this journey. Therefore, tonight our family will have a special time of prayer for Kenzie, Dusty and Deacon as they await Maddox's birth.

I will post regarding Tristan again tomorrow night, thank you for understanding. Please pray for the Stanfield family and please continue praying for the specific requests (in yesterday's entry) for Tristan.

Proverbs 18:24 says: "A man of many companions may come to ruin, but there is a friend who sticks closer than a brother."

Bible notes: We all need friends who will stick close, listen, care and offer help when it is needed-in good times and bad. It is better to have one such friend than dozens of superficial acquaintances. Instead of wishing you could find a true friend, seek to become one. There are people who need your friendship. Ask God to reveal them to you, and then take on the challenge of being a true friend.

Urgent prayer request: The Stanfield family (Maddox)

As I mentioned 3 weeks ago, when Trayc and I first started out on this Trisomy 18 road in August we felt so alone because we did not know anything about T-18 nor did we know anyone going through this. Since that time the Lord has brought so many sweet Christian girls into my life, via the Internet, and we have been able to walk this road together. We have shared our prayer requests, our answered prayers, our hopes, our dreams, our excitement, our sadness, our disappointments and our fears. Along this journey I have asked for special prayer for my sweet friends, Angie Luce (12/1/07) and Kim Summons (1/14/08) and now I am asking for prayer for my friend, Kenzie Stanfield.

***Kenzie asked that I post the following details on my blog because she did not have time to do a post before she left the house, however they will update their blog as soon as possible***

Kenzie just called me from the hospital and said she was being admitted because she is having contractions 4-5 minutes apart, she was scheduled for February 5th. One of her good friends drove her to the hospital and is by her side because her husband, Dusty, is out-of-town on business. He was in the process of catching a flight from one airport to another and then driving the rest of the way so please pray for his safety while traveling and that he makes it in time for Maddox's birth. Kenzie was also trying to reach all of her and Dusty's family members because they live out-of-town, so please pray for their safety as they travel to the hospital tonight. Please pray that Kenzie will remain emotionally strong and calm and will continue to feel the peace she has felt throughout her pregnancy, I know how overwhelmed and scared she must be feeling right now without Dusty and their family members there supporting her. Also, please specifically pray that Maddox be born alive, that his heart rate will remain strong, that he will not be in distress and that Kenzie and her family will be able to share some very precious moments with Maddox.


***UPDATE on 1/22/08 at 8:30 pm***
Kenzie has now posted an entry on her blog from the hospital room, please go to her link for a current update on the awaited birth of Maddox.


***UPDATE on 1/23/08 at 6:30 pm***
I spoke with Kenzie's sister this evening and she said that Maddox was born at 4:25PM this afternoon, he weighed 3lbs and was 15 inches long. He opened his little eyes to look at his daddy and then went home to be with Jesus!!!!! My heart aches for Kenzie, Dusty and for little Deacon tonight. I cannot imagine all that they are experiencing right now, but I do know this, they love the Lord with all their heart and in the midst of their grief they are thanking Him for their precious little boy even though his time on earth was only for a brief moment. Please remember them in your prayers tonight and in the upcoming days as they prepare for Maddox's memorial service on Saturday. Please visit their blog for more information. Their link is located under our family picture.


James 5:16 says: "Confess your faults to one another and pray for one another, that ye may be healed. The effectual fervent prayer of a righteous man (friend) availeth much."

Monday, January 21, 2008

Day 50 - Pray for Tristan

Tristan had a really rough night last night! He was awake and cried most of the night and when he finally fell asleep his apnea monitor went off several times. His stomach was very upset and his color changed several times so we took turns watching him all night. We are so excited and humbled that the Lord has allowed us to already have 50 incredible days and yet at the same time we are faced with new challenges every day as Tristan's health and little body reacts differently. In the past few weeks I have come here, to my blog, and asked for prayer for so many of my sweet Internet friends and will continue to do so as the need arises, however today I simply come and ask that you please pray for Tristan. I know that so many of you are praying for us, as the comments reflect and we so appreciate it, it means more than we can express. I know you are a praying group of "Internet" people and that is why I am posting this entry. Please remember Tristan and our family in the upcoming days. The following is a list of specific prayer requests that we would ask that you pray about:

1. For Tristan's 2 heart meds to work - the first reduces the fluid in his lungs, the second allows the blood to flow through his heart correctly

2. For Tristan's doctors to have wisdom re: his heart, his reflux, his apnea and his weight gain

3. For the Zantac to work - this helps the reflux

4. For Tristan's oxygen levels to rise - they are low, this is why he is turning gray and blue

5. For Tristan's apnea to decrease - this is when he stops breathing

6. For my and Trayc's emotions and fears as we face each day


Thank you for continuing to follow our journey and for praying for our family!

Philippians 4:6-7 says: "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

Sunday, January 20, 2008

Day 49 - We have a doctor in the house


Tristan had a good night until around 4:00 am when he started turning blue so we turned up the oxygen and his color slowly returned so I sat in bed and held him until he fell asleep around 6:00 am. Tristan's color changed back and forth most of the day today so we took turns watching him.

Every time his color changes it is scary, I guess fortunately we have a "little" doctor in the house! Yes, this is Tayden listening to Tristan's heart. Every day Tayden watches Trayc do this when he is listening to make sure the feeding tube is in Tristan's stomach. So, Tayden ran in his room and got his Fisher Price doctor kit, pulled out the stethoscope and put it in his ears - isn't he cute? Tayden is a lot more aware of Tristan than he was just 7 weeks ago and I am so glad. Every morning I say, "Let's go see the baby" and he runs into our room, climbs up on the bed, leans over the bassinet, touches the blanket and then he's off and running again. He's almost 2 yr. old and although he does not truly understand what's going on I am so glad he's being a part of the family in his own way. Whether it's with the toy stethoscope or when he takes the aspirator and squeezes it on Tristan's head or when he takes Tristan's doggie and lays it on Tristan's stomach or hands a diaper to Tristan, YES he really does all of this, it's so funny and yet it warms my heart.

Please pray for Tristan's strength, please pray for Tristan's color change, please pray that the 2 heart meds will work and please pray for us as we face another new day tomorrow.

Saturday, January 19, 2008

Day 48 - Who do I look like?


Tristan had a great night last night and his apnea monitor only went off once. Tanner spent most of his day beside Tristan's bassinet talking to him and rubbing his head - yes, trying to get him refocused on home school is easier said than done, oh well we'll eventually catch up! Okay, this entry is in response to everyone who emails or comments on the blog asking "Who does Tristan look like? - So, here it is head to toe:

Birth weight/size
: Tanner was only 5 lbs. so he's following after his big brother.

Hair: This is a first! Trayc, Tanner, Tayden nor I had hair until we were over a year old!

Hair color: This is a first also! Tanner had white hair until he was 4, then it turned blonde and now it's brown. Tayden had and still has strawberry blonde. Mine is light brown (w/highlights, of course, thanks to my beautician) and Trayc had white hair until he was 12 yr old then it turned brown.

Eyes: Still waiting to see what color those will be. Trayc and Tanner have hazel, Tayden and I have blue so we'll see, Tristan might be the first to have dark brown eyes.

Eyelashes: Tanner, Tayden and I have the same long eyelashes.

Ears: We all have the same ears.

Nose: Tanner and Tayden have the same little button.

Lips: Trayc, Tanner and Tayden have the same small lips.

Body: Tanner has the same skinny figure.

Fingers: Tanner and I have the same long and thin fingers - perfect for playing the piano.

Legs: Trayc and Tanner have the same shape legs. (Tanner says Tristan has the perfect legs for soccer)

Toes: I have to admit these are from my side of the family.

Attitude when hungry: This would definitely be like Tayden.

There you have it! If you look at all Tristan's features he has a little bit of Trayc and I, a little of Tayden but overall he pretty much looks like a "little Tanner", this has been the consensus from both our families since Tristan was born. When we found out about Tristan having T-18, on August 15th, the high-risk doctors explained it like this "Trisomy 18 means they are incompatible with life, these kind of babies have lots of problems, they do not look like a normal baby, they look physically retarded, they are severally mentally retarded ....... (their list went on and on)......." As they were saying this my first thought was "What will Tristan look like?" Not that I wouldn't had loved him if he didn't look perfect in the eyes of the world, he was my precious little boy and my flesh and blood, but I wondered if he would look anything like us or like Tanner and Tayden. I began praying that the Lord would allow Tristan to look like us - all of my prayers were answered, he does look a little like each of us, the Lord gave me the desire of my heart!

Please pray for Tristan's continued strength, please pray for the 2 heart meds to work and please pray for us as we face a new day tomorrow.

Psalm 37:4 says: "Delight yourself in the Lord and He will give you the desires of your heart."

Psalm 139 says: "For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."

Friday, January 18, 2008

Day 47 - #24 has a new little fan


Tristan had a great night sleep last night and his apnea monitor did not go off at all. Tristan had a good day today except that his color changed 2 different times tonight. He has seemed a lot less fussy the last few days so we are hoping the Zantac is helping the reflux plus we are hoping to see a change since we switched formulas.

Well, if you are a NASCAR fan then you know the 2008 races begin in 3 weeks on February 9th in Daytona. Tanner bought a NASCAR magazine at the store tonight and was so excited that he wanted to come home and watch his NASCAR movie called ESPN's Ultimate Nascar 100 defining moments. Tanner got into racing when he was 6 yrs old because my step-dad worked for 10 yrs at the Charlotte Motor Speedway. We have taken Tanner to several races, of course the only driver we cheer for is Jeff Gordon but Tanner can tell you all the drivers names, numbers and stats. So, in preparation for the upcoming race season Tanner wanted to dress Tristan up in his Jeff Gordon outfit so they could match.

Let me explain the story behind Tristan's outfit and why it's so special to us. My Dad and Step-mom bought the outfit for Tristan back in July, right after we found out we were having another boy. Two weeks later we found out that Tristan had T-18 and were told by doctors that he had a less than 50% chance of surviving to birth . So, you can imagine how bad they felt, they'd given us a baby outfit that may never be worn, although they never could have known the news we would have received, it was still heart breaking every time my Step-mom thought about it. So, we are dedicating this entry to my Dad and Step-mom: Look at your precious grandson, he IS able to wear the Jeff Gordon outfit you bought him!!! Now he's ready for racing season, somebody needs to tell Jeff Gordon he has a new little fan cheering for him!!!

Please pray for Tristan's continued strength, please pray that the 2 heart meds will work, please pray that Tristan's color will not change again and please pray for us as we face another new day tomorrow.

Thursday, January 17, 2008

Day 46 - 1st Nutrionist appt.

Tristan slept a lot better last night, he was only fussy for one hour (4-5:00 am) and his apnea monitor did not go off at all.

We had Tristan's appt. with the nutritionist at 10:30 am this morning. First, Tristan weighs 4.1 and is 18 inches long - that means he is almost back to his birth weight AND he has grown 1 1/2 inches, we are so excited! We are also going to change his formula from ProSobee to Nutramigen and work towards increasing his calorie intake to gain more weight. Second, I know this is repeating myself from yesterday and Monday but I have to share that again the Lord put another person in our path for Tristan's medical care. She was just as sweet, positive and optimistic as the cardiologist and speech therapist. At all 3 of these appts. we have felt so encouraged and never rushed. The rushed part is a big thing because as we all know at doctor's appts you can feel like you are "just another patient, just another name, your in/your out". I can honestly say that at no time during all 3 of these appts have we felt like this. You know, with Tanner and Tayden, it's okay to feel like your in/out (actually it's good to feel like that with them because who has time to just sit right? there's always a list of things to do) but with Tristan I do not want it to be that way! I want to feel like the doctors really do care about him and his well-being and that they are actively pursuing his health issues not looking at him as a statistic and thinking "he is already considered incompatible with life so why try to pursue anything". Fortunately, I have not personally experienced this but this was a fear of mine as I have spoken with several T-18 moms and have read 100's of stories on the Internet knowing this is how many doctors are and some parents have traveled to different states to get help, oh I am so thankful the Lord is opening up doors with sweet, helpful and concerned doctors here in Jacksonville. All 3 of these specialists have said, "we need to start now, we need to get Tristan caught up, we need to work with him so that when the time comes for surgeries he'll be strong and healthy and ahead of the game, not trying to play catch up" - Wow, not what we were EVER expecting to hear from any doctor!!!

So, that's why all the appts. We are trying to make good health decisions for Tristan so that if he does live a little while we are already headed in that direction and if the Lord chooses to take him earlier then at least as Tristan's mom and dad we will know in our hearts we did everything we felt the Lord was leading us to do. Also, please realize that although our pregnancy journey is over and our precious little boy is still with us on Day 46, we are still on this T-18 road. Every day we are faced with new and different issues. There are moments we forget about this disease because we feel like a normal family of 5, but then there are moments we are faced with reality again which can cause it to be very emotional at times.

Please pray for us as a family to continue being strong and to continue feeling the peace we feel, for Tristan's continued strength, please pray for the 2 heart meds to work and for us as we face another new day tomorrow.

Wednesday, January 16, 2008

Day 45 - 1st Speech Therapy appt.

Tristan slept really good last night until 2:00 am when he woke up fussy and cried until 6:00 am. We tried everything to console him and nothing was working so we took turns holding him until he finally fell asleep. We are in the process of figuring out if this is the reflux, his formula or possibly colic.

We had the appt. with the speech therapist at 10:00 am this morning. First, let me say, she was just as sweet and optimistic as the cardiologist - another person the Lord put in our path for Tristan's medical care. Second, she talked to us for awhile about Tristan and then she started teaching us things we needed to do daily like swaddling him in the receiving blankets so he feels secure, vibration in his bouncy seat, every 3 hrs. during his feed time putting drops of formula on the pacifier to try and teach him to suck and swallow the formula, watching the "sensors" in his environment like having him with us at the dinner table to smell the foods, watching sounds around him like TV or other noises too loud(this is going to be interesting with a 2 yr. old in the house) or the lighting - when it's night time keeping the lights out and day time the lights on, okay mommy is completely at fault here, I keep the nightstand light on ALL night to make sure he doesn't turn colors so this is something I'll definitely have to pray about. It was a very informative appt. and obviously we have lots of homework!!! And, tomorrow we have an appt. with the Nutritionist and we are looking forward to this appt as it will help assist our pediatrician and other specialists with Tristan's calorie intake which will ultimately help him gain weight.

Trayc was able to take Tanner to choir tonight, Tanner was so excited because the 5th grade choir was singing in church tonight and he loves to do that, hey 2 Wednesday nights in a row we're slowly getting back to normal!

Please pray for Tristan's strength, please pray that the 2 hearts meds work, please pray for us as we start working with Tristan to learn to swallow, please pray that MOMMY can keep the lights off at night time and please pray for us as we face another new day tomorrow.

Tuesday, January 15, 2008

Day 44 - Tristan.....our witnessing tool

Tristan had a great night sleep last night and his apnea monitor did not go off at all.

The cardiologist was very proactive today in scheduling appts for us to get in with both the nutrition specialist and the speech therapist between now and next week. Today was pretty busy with phone calls between 4 different doctors office trying to get them all set up. We have an appt. tomorrow with the speech therapist and Thursday with the nutritionist. The speech therapist will work with Tristan to see if he can learn to suck and swallow formula from a bottle, as this is their ultimate goal for him. He has the sucking down because he loves his pacifier, he just hasn't figured out the swallowing part, so we are looking forward this appt. to see if he has the ability to learn to swallow and what their thoughts are. I told Trayc that although today was very, very busy and I hardly put the phone down it was a great day because I was on the phone making appts for our precious little miracle boy, Tristan. Who would have ever thought we'd be here on Day 44 making so many doctors appts.? I feel so privileged and honored to be making all of these appts.

Do you know what every appt. allows us to do? Its gives Trayc and I the chance to tell Tristan's story to someone else and we are able to witness to every person we come in contact with - from the receptionist to the doctor. I mean, it is so easy to start up a conversation, that leads to witnessing, when we walk into an appt. and everyone KNOWS he's Trisomy 18 and that it's a miracle he's still here. We are using every opportunity given, through Tristan's life, to bring honor and glory to the Lord and to reach people for His kingdom. Although we may never know WHY Tristan has T-18, we must use every opportunity to reach others for the Lord in obedience to His word.

Please pray that we will be a witness to every person we come in contact with, please pray for Tristan's strength, please pray that the 2 heart meds will start working, please pray for Tristan's appt. tomorrow with the speech therapist and please pray for us as we face another new day tomorrow.

John 9:1-3: "As he went along, he saw a man blind from birth. His disciples asked him, Rabbi who sinner, this man or his parents, that he was born blind? Neither this man nor his parents sinner, said Jesus, but this happened so that the work of God might be displayed in his life".

Monday, January 14, 2008

Day 43 - 1st Cardiology appt.

Tristan had another great night, he slept all night and his apnea monitor only went off once. We were up and off to an early start this morning. We left the house at 7:45 am for Tristan's 9:00 am cardiology appt. where he had a EKG and heart echo. Back in August we were told by the high-risk doctors that the hole in Tristan's heart was a .4, which is very small and that it could possibly close up before birth and every neonatologist that saw Tristan in the hospital said the hole sounded very small. Well, we learned that it is NOT .4, it is .8 so this was very surprising to us. After the tests were performed we met with the Cardiologist, she was a sweet, comforting and very optimistic doctor - we know for sure that the Lord had chosen her (out of all the doctors in that group) just for us! She said that T-18 babies usually have "heart failure" beginning around 6-8 weeks (Tristan is 6 weeks today, she said we made it just in time) so her goal is to stop the process before it gets to that point. She gave us prescriptions for 2 heart medications that Tristan will start tonight and then she is scheduling appts with a nutritionist and speech therapist. The nutritionist would help us change Tristan's diet intake so that he can gain weight faster and the speech therapist would work with Tristan to see if he would be able to suck and swallow from a bottle. She then sent us down the street to the children's hospital for a chest x-ray to see the condition of Tristan's lungs and to make sure there was no infection in them(there was no infection however it did show signs of the beginning of heart failure). It was a very long day, we did not get home until 3:00 pm so needless to say we are a little tired. We ate dinner and are definitely getting to bed early tonight. Please pray for Tristan's strength, please pray for Tristan as he begins the 2 hearts meds tonight, please pray for Trayc and I as we continue to make medical decisions for Tristan and please pray for us as we face another new day tomorrow.


As we attend each appt. of Tristan's in the upcoming days, this will be the verses we will claim:

Proverbs 3:5-6 says: "Trust in the Lord with all of your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight."

Bible notes: Bring your decisions to God in prayer; use the Bible as your guide; and then follow God's leading. He will make your paths straight by both guiding and protecting you.

Sunday, January 13, 2008

Special prayer request: The Summons family (Mary Grace)

When Trayc and I first started out on this Trisomy 18 road in August we felt so alone because we did not know anything about T-18 nor did we know anyone going through this. Since that time the Lord has brought so many sweet Christian girls into my life, via the Internet, and we have been able to walk this road together. We have shared our prayer requests, our answered prayers, our hopes, our dreams, our excitement, our sadness, our disappointments and our fears. One of those sweet friends is Kim Summons. She is going to the hospital tonight where she will be admitted and begin the induction process to meet her precious daughter, Mary Grace, sometime tomorrow. I would ask that you please join me in prayer tonight and all day tomorrow for Kim and her husband Chris, their 2 daughters Kailey and Allison and for all of their extended family members that will be joining them at the hospital. Also, please specifically pray that Mary Grace will be born alive, that her heart rate will remain strong, that she will not be in distress and that Kim and her family will be able to share some very precious moments with Mary Grace. For further information and updates please check their blog "Mary Grace Summons" (their link is located under our family picture).

******UPDATE*******
(Monday, January 14th)
I just received a message that Mary Grace was born at 6:15 am and has gone home to be with Jesus!!!!! My heart breaks for Kim, Chris and their 2 precious girls, Kailey and Allison. I am reminded once again of the reality and sadness of this disease, Trisomy 18, however I am so thankful that Mary Grace was born alive, that the girls were able to bathe her and that Allison was able to change her diaper, what precious memories they were able to make with their new little sister. Please continue to pray for the Summons while they remain in the hospital this week, please pray for their 2 daughters' hearts to heal, please pray for Kim to quickly heal from the c-section and please pray for them as they face the upcoming weeks. For the complete birth and home-going of Mary Grace please check their blog "Mary Grace Summons" (their link is located under our family picture).


James 5:16 says: "Confess your faults to one another and pray for one another, that ye may be healed. The effectual fervent prayer of a righteous man (friend) availeth much."

Day 42 - It's down

Tristan had a good night sleep last night and so did mommy. Trayc and I switched sides of the bed so that he could sleep beside Tristan to take care of him so that I could sleep all night, what a great husband!

This morning Tanner and I went to Cracker Barrel for breakfast. I felt like since Trayc took him to get ice cream Thursday night and then he spent Friday night and Saturday at his friends house this would be a good way to end his fun weekend! We had so much fun together, we laughed, we talked and we played the games on the kid's menu, he had all of my attention, not to mention it certainly was nice to eat out, I haven't been to a restaurant since December 2nd because we're home bound, so this was a real treat for me!!!! Then we came back home and watched our church on TV, I am so glad our service is televised. I really miss being there and do not understand how people say that watching church on TV is the same as being there. We've been out for 6 Sundays/6 Wednesdays and it is not the same, of course how can it be, we have a 2 yr. old running around playing with his Leap Frog alphabet magnets that sing the ABC's over and over and over, hey we will be more thankful when we do return for the nursery workers!

After we watched our church service we did what I've really been putting off......yes, the Christmas tree, it's down. I'm not exactly sure what all the attachment is to the tree this year, I guess because I realize that, barring a miracle, Tristan will not be here next year for Christmas and to me as long as the tree is up and he's still with us then it's still Christmas at our house. Every time I look at the tree I am reminded of being pregnant with Tristan and the excitement we all had decorating the tree and praying at the same time, praying the Lord will allow Tristan to come home so we could celebrate at least one Christmas with him , we saved a branch from the tree to use as display on a wall we are making for Tristan's things. Tristan did come home from the hospital and I am so thankful the Lord allowed us to celebrate Tristan's 1st Christmas - so, even though the tree is down, we will never forget December 25, 2007.

Please pray for Tristan's strength, please pray for us as we go to Tristan's appt. tomorrow for the heart echo and please pray for us as we face another new day tomorrow.

Saturday, January 12, 2008

Day 41 - Without the tape!


Tristan had another great night last night, he slept the entire night, his apnea monitor did not go off at all and most importantly his color did not change again after those 2 incidents at 8:45 pm and 9:30 pm last night, this is a big praise! Tanner came home late this afternoon, he had so much fun spending the night at his friends house! And Tayden, he was so excited to see Tanner, he wouldn't leave him alone. After dinner we bathed Tristan and then Trayc said he needed to replace Tristan's feeding tube so before he put it back in guess what I got to do? I was able to kiss all of his little cheeks, rub all of his face and touch all of his little lips WITHOUT THE TAPE. See, he's had a feeding tube since the day he was born and the oxygen since Dec. 23rd so I really only get to rub his little forehead because his face is to tiny therefore between the feeding tube tape and oxygen tape, it pretty much covers every part of his face from his eyes down to his chine. I cannot put into words how I felt, it was so sweet to touch his soft little face and feel his face against mine WITHOUT THE TAPE. I was smothering him with kisses as I was telling him over and over "Mommy loves you so much, Tristan, and I am so proud of you for making it to Day 41, you're mommy's big boy", I'm just trying to enjoy every moment I can to love on our precious little boy, taking nothing for granted - even the fact that the tape was off. We took lots of pictures so we could see his sweet face and lips (see above picture) WITHOUT THE TAPE. Then, we all sat on the couch to watch the Jaguars and Patriots play in the Playoffs and for everyone who watched the game you know the Patriots won, oh well maybe next year! Please pray for Tristan's continued strength, please pray for his apnea to decrease, please pray for his color change and please pray for us as we face another new day tomorrow.

Friday, January 11, 2008

Day 40 - Bridging the gap

Tristan had another great night last night, he slept all night and his apnea monitor only went off once. Tristan had a good day today, his apnea monitor only went off once but at 8:45 pm tonight he started turning blue so we used the oxygen on high and it slowly returned and it happened again at 9:30 pm. He's been okay since then but we will take turns watching him during the night - it's been a little hard emotionally because I get so scared when this happens.

Tanner is spending the night at his friends house tonight so he was EXTREMELY excited all day long. I really miss Tanner being here tonight but I know this is what he needs, a night away to play and have fun with boys his own age and to escape the reality of home. I know it can be so hard on him sometimes because all of our attention is on Tristan but at the same time he understands and he really loves helping with Tristan, he knows how to use all of Tristan's equipment and he even knows how to do the feedings so we're very thankful for such an incredible 11 yr. old, the Lord has blessed us with 3 very precious boys.

As far as Tayden tonight, you can imagine how very lonely he is, he loves playing with Tanner - his world revolves around his big brother. When I was pregnant with Tayden I constantly prayed that the Lord would help me bridge the age gap between he and Tanner because I wanted them to be able to play together and have a close brotherly bond. It's amazingly true, if you saw them together you would never know there is a 10-yr. age gap. It makes me smile when I look in Tayden's room and Tanner is sitting beside him playing with his little trains or Tanner is teaching him how to play with all of his new little dump trucks he got for Christmas or Tanner is reading him a book or Tanner is sitting in the bathroom floor leaning over the tub playing with Tayden. And it makes me laugh so hard when Tanner is trying "on his own" to teach Tayden how to use his little Fisher Price potty - it is absolutely not working but it is worth watching as Tanner sits Tayden on the potty and then tries to explain to Tayden to "go potty in there not your diaper" and then Tayden gets up and runs down the hallway laughing!!! Yes, all of these moments are priceless and although this is not how I wanted it to be (10 yr. age difference) I have to believe, just like with Tristan having T-18 that this is the Lord's plan for our family and He will help me continue to bridge the gap between them so they will grow up being very close and loving each other just like they do right now.

Please pray that Tristan will not turn blue again tonight, please pray for Trayc and I as we take turns watching him during the night, please pray for Tanner as he is spending the night away from home and please pray for us as we face another new day tomorrow.

Thursday, January 10, 2008

Day 39 - We have a plan!

Tristan had a great night last night, he slept really well and his apnea monitor only went off once. Tristan had a pretty good today too, except his apnea monitor went off 4 times.

The excitement for today? We officially switched from Hospice comfort care to Hospice palliative care. Weeks prior to Tristan being born we contacted Hospice, explained our story and arranged for them to be the sole care provider for Tristan. We were placed in the comfort care program which basically means we had weekly nurse visits, 24 hr. on-call nurses for questions and they set up the oxygen, apnea monitor and medical supply deliveries. We have been very happy with the program and the nurses have been so sweet and available for us at any time of the day/night, however Trayc and I having been talking and praying for the last 2 weeks regarding Tristan's future medical care.

When I was pregnant we only went to my OB/GYN appts., we never pursued any other specialists like a neonatologist, a cardiologist, a neurologist because our focus at that point was how to get Tristan here alive not sitting in countless appts. with specialists speaking of the "what if's" because we felt like if the Lord allowed Tristan to be with us past his birth then we would have plenty of time to pursue it then. Well here we are on Day 39, so much further than we ever expected and we have NO PLAN!!! To most people that might be okay, they can just change plans and make decisions quickly, well not us. Trayc and I are planners to the extreme - YES, just ask anyone who knows us, we plan for everything even our children's birthday parties and buy decorations 6 months out, it's true, but hey it works for us!!!! So, last Friday I mentioned to Trayc that we were on Day 33 and had no plan, that I felt like as parents we weren't doing anything but sitting home giving Tristan love, food and oxygen and even though we don't want to take any drastic measures, I feel like we need to do something! So we contacted our sweet pediatrician, who is also a very good friend that has walked this journey with us since August 15th, and asked if she would be willing to take over Tristan's care even though this is not her typical kind of patient and she sweetly agreed. Hey, now we have a plan, oh we feel so much better!!!! We do not take her agreeing to help lightly, T-18 can be very complex, there are a lot of issues and lots of information to research but she is willing to do all of this for us, she is just another person the Lord is truly using in our lives at this time. She saw Tristan on Monday and her first step of action was to prescribe liquid Zantac for his reflex so we are hoping this will help with the fussiness. The second step was to order a heart echo. On August 15th (same day they told us about T-18) the doctors saw a .4mm hole in Tristan's heart so we would like to know the size of it now, it's still there because it was heard by the doctor when he was born. And, she is in the process of exploring treatments for the apnea like caffeine, etc. So we are excited to be switching Hospice programs because this means that Tristan has survived so much longer than we expected when we signed up with Hospice in the beginning.

We realize the Lord has all of this in His control and He may choose to take Tristan before any of these plans are fulfilled, however we feel as though the Lord has also given us Tristan as our precious little boy to love, cherish and take care of and by taking care of him we must make sure we are doing everything possible including exploring future medical options. We are praying that the Lord will continue to guide us in ever decision we make regarding Tristan's future care just like when we were pregnant. We have a heart echo scheduled for Monday so please be praying for the appt., please continue to pray for Tristan's strength, please pray that his apnea will decrease and please pray for us as we face another new day tomorrow.

Jeremiah 29:11-12 says: "For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plan to give you hope and a future. Then you will call upon me and come and pray to me, and I will listen to you."

Bible notes: God knows the future, and his plans for us are good and full of hope. As long as God, who knows the future, provides our agenda and goes with us as we fulfill his mission, we can have boundless hope. This does not mean that we will be spared pain, suffering or hardship but that God will see us through to a glorious conclusion.

Wednesday, January 9, 2008

Day 38 - My life song

Tristan had another rough night. His apnea monitor went off 5 times and he was fussy from about 3:00-5:00 am. He did have a better day today and he is now at 25 ml of formula, we've come a long way since he was born 38 days ago, he was only at 10 ml then - he should really be gaining some more weight soon. The excitement for today? We made it through yesterday, our first official "back to normal" life"! Although I really miss the mornings of laying in bed with Trayc and all 3 boys between us, getting up to eat breakfast at whatever time we want, spending our days as a family of 5 enjoying every single moment and having Christmas nightly, I guess it was good to begin getting back to normal, after all, we've done this the entire month of December and 7 days in January! When Trayc got home from work I immediately left and took Tanner to choir, it gave us one-on-one time for an hour. He was so excited when we pulled up at church and as he opened the door he smiled and said, "Bye mom, I love you!", seeing his excitement was definitely worth it because this was something Tanner was doing, not Tayden and not Tristan so he got all of my attention, all 100% of it. I sat in the car and waited on Tanner because I was not dressed for church and honestly just needed the time ALONE to think, to pray and listen to music. I listened to my favorite CD called Look Up, by the group Evidence. There is one song, in particular, that has deeply touched my heart since August. Let me explain. If you read our blog on August 15th you know the devastation we felt as the "high risk" doctors gave us the news that our little boy had T-18 and was considered "incompatible with life", our hopes and dreams for our little boy's future were crushed and we had no guarantees that he would even survive until December, as per statistics. When Trayc and I got in the car that day we were both crying and we held each other's hands, no words were said, after all what could be said in those moments, we were speechless! As Trayc turned the key to start the car the CD player started with the next song. The song was one I had listened to for months prior to that day, so I've heard it 100's of times, sung it 100's of times but I've never truly HEARD the words, if you know what I mean. As we drove home the song was playing and I HEARD EVERY WORD in a way I'd never heard it before - what a song, what words, what timing!!!! As I listened to the song on that very devastating day I told Trayc, "That should be my life song now, like my life verse?" I don't know, I've never heard of a life song, I made it up in that moment because the song was exactly how I was feeling. In the beginning I would literally cry every time I heard and sang the song, eventually it became a prayer (that I would sing to the Lord) when I didn't know how else to pray and now that Tristan is here it has become a song of thankfulness to the Lord for allowing us this time, and I sing it as a promise of obedience to Him as I say "whatever pathway You should choose I will see it as dry land!" To me this means that whatever way the Lord chooses for us and for Tristan's little life, no matter how long or how short, I will accept this as His plan for our lives. I hope as you listen to this song, you will HEAR the words, it will bless you and touch you, as it not only applies to me, a mom of a new T-18 baby, but it applies to every person in a difficult situation, someone faced with the uncertainty of tomorrow or just someone facing the normal trials and tribulations of every day life:

10 Open The Sea.mp...


OPEN THE SEA
(Written and sung by Amy Henning)

The Israelites faced a sea before them
A mountain on each side
Pharaoh's army was in pursuit
There was nowhere for them to hide
Then God opened the sea; did away with the enemy
In a mighty display
If He did it for them so long ago
Will He do it for me today? I Pray

Open the sea, make a way for me
I'm holding to Your hand
Whatever pathway You should choose
I will see it as dry land
Wherever You lead me, I will go
Holding to this truth I know that
You can open the sea

Sometimes my sea, it overwhelms me
I want to see dry land
Waves of doubt and fear rush in
And I struggle to understand
Then You take me right back to the edge of the water
Reminding me of before
And in that moment I know Your heart
And I cry out with faith once more

What makes this song even more special to me is that Trayc and I grew up at church with the guys of this group, Evidence. Tim Henning, Kirk Kirkland and Trayc sang in a high school quartet together, we went to Nashville in November 2006 to meet their wives and we are still friends with them today. They have pursued their dream to the fullest, the same dream Trayc and I have always had - we just never made it that far. We feel so blessed to be friends with The Hennings and The Kirklands and so thankful they are using their talent to reach others for the Lord through their music and bless hurting people like us. If you would like to hear more of their music please visit their website at www.evidenceministries.com

To Amy Henning: Thank you for writing this incredible song that has touched my heart so much during this time in my life, for your sweet emails, your constant support and for your friendship. Also, thank you for allowing me to use your song on my blog to help encourage and bless others while on the Trisomy 18 journey.

Tuesday, January 8, 2008

Day 37 - Back to normal

Tristan had a great night last night, he slept all night and his apena monitor only went off once. He had a little rougher day today and his apnea monitor went off 6 times. The excitement for today? Honestly, attempting to get things back to normal at home. Trayc back to work, cleaning the house, Tristan's feedings every 3 hrs., loving and holding Tristan most of the day, Tanner refocused on home-school (this is so hard, all he wants to do is hold Tristan), Tayden back to playing by himself (this is so hard, all he wants to do is play with Tanner), Tanner back to piano lessons, Tanner back to church choir, Tanner back to practicing soccer before he begins another season in a few weeks and oh yeah, taking a shower before Trayc gets home! I'm tired just thinking about all I have to do to get back to a normal life. We have had an incredible month of holiday celebrations and fun nightly activities, as you can tell by all the photos since Tristan came home and although we are so excited Tristan is still with us and we will continue to have fun nightly activities, we need to start getting back to normal as much as possible. I realized that tonight more than ever before. I told Tanner with Tristan having several "blue spells" the last 2 days that he may not be able to start back to choir tomorrow night, it may be another week or two(we live an hour from church). Oh the sadness in his eyes and total disappointment as his little shoulders slummed over and he quietly said, "Yes mam, I understand" and walked to his room. It just broke my heart so I quickly walked into his room and said, "I realize our life and yours has been on-hold since August and I greatly appreciate you being so understanding. We will figure out about choir for tomorrow night okay, I promise". I love Tanner so much, he's our first born and he is definitely our first miracle baby, as we were told we'd never have children!!! He has been so unbelievable through all of this, we're together all day so he's been through this every day too, the good days and the sad days, and we had promised him that his life would return back to normal after Tristan was born. So, here we are on Day 37 and basically his little ears heard me saying "No, life is not returning back to normal yet you'll have to wait just a little longer". I told Trayc what Tanner had said and he agreed that we really need to make sure we do everything possible to get Tanner's life somewhat back to normal even with the uncertainty of each day and with the uncertainty of Tristan's life. If you're a mom of a T-18 baby and have other children then you completely understand the situation we're in right now, trying to provide 24 hr. care to Tristan and enjoy every moment we have with him realizing we only have so long with him and then trying to keep your other children's lives in a normal state too, fortunately Tayden doesn't not know or care about anything except playing with his toys and with his big brother Tanner, so he doesn't feel it but Tanner does. So please pray that we, as parents, can attempt in the midst of total uncertainty with Tristan, return Tanner's life back to some kind of normalcy. And as always, please pray for Tristan's strength, please pray for the apnea to decrease and please pray for us as we face a new day tomorrow.

Monday, January 7, 2008

Day 36 - Night of celebration


Tristan had a very rough night that started around 11:30 pm when his color changed to gray and then to blue, slowly it returned back to normal as we increased the oxygen and then his apnea monitor went off 4 times. He was a little better today but his color did change again, fortunately only once. The excitement for today? We attended a one-month birthday party at the hospital where Tristan was born. As we drove up to the hospital Trayc and I were talking about our drive to the hospital on December 3rd. We were full of such mixed emotions that day. We were excited that we would be holding our little boy within a few hours, we were a little scared as to what the day would hold and we were very unsure as to the future from that day forward, and yet here we were driving up tonight (exactly one month from the day we left the hospital) attending a party for our little boy who is now on Day 36! As we entered the 3rd floor Labor & Delivery tonight our emotions were far different from the day we entered those same doors on December 3rd - this time we were smiling, laughing, so excited about seeing everyone again and absolutely proud to be there showing off our little miracle, Tristan. As the doors opened, approximately 20 nurses were standing at the front singing "Happy Birthday" to Tristan. We were so surprised not to mention absolutely touched! After the song the nurses came up, one-by-one, and hugged all of us and then one of the nurses said, "Would you like us to take you to your room?" Guess where we went? Yes, Room 336, if you read our blog entry on Day 10 titled "Thank you: to our doctors/nurses" then you will completely understand the full meaning of this room. We put on party hats (yes, even Tristan), ate cake, Tanner, Tayden and Tristan had gifts to open from the nurses, we had a sweet time of sharing and then we all joined hands in a circle and one of our nurses closed the celebration with prayer. What a sweet hour and a half it was and what an incredible night, all on behalf of our precious little boy! The Lord has blessed us with so many special people on this journey and the nurses at Baptist South are a huge part of that. Please pray for Tristan's continued strength, please pray for his apnea episodes, please pray for us as we face another new day tomorrow.


To all 3rd Floor L&D nurses: Thank you for making tonight so special for our family! You ALL mean so much to us and we appreciate you supporting us from the moment we entered the doors on December 3rd all the way to the celebration tonight! Thank you for continuing to call us and for checking our blog for daily updates. We will never forget any of you. May the Lord continue to use each one of you to touch the lives of other new mommies.

Sunday, January 6, 2008

Day 35 - Our miracle baby



Tristan had another good night and his apnea monitor only went off once. The excitement for today? Two things. First my parents came over after church, ate lunch with us and then spent the day loving on Tristan. Second, a few weeks ago we received the disc from our sweet photographer, Peggy McAteer, from the Now I Lay Me Down To Sleep organization, with all of the hospital pictures however because there were over 300 we've just now gone through and picked out a few to post on our blog. We wanted to share these pictures so that you can see the precious little miracle boy the Lord has greatly blessed our family with. Please continue to pray for Tristan's strength and please pray for us as we face a new day tomorrow.

Saturday, January 5, 2008

Day 34 - Go JAGS!


Tristan had a really good night sleep last night, he actually slept from 12:30 am to 9:30 am this morning, he didn't even wake up when we changed his diaper during his every 3 hr. feeding, now that's a great night for mommy and daddy! Tristan also had a good day today. The excitement for tonight? We live in Jacksonville, Florida so we're big Jaguar fans. For years my dad had season tickets so we would go to several games each season, however, being pregnant with Tayden 2 years ago and then Tristan this past year we've had to watch the games on TV. We quickly learned that even if you can't be at the game you can still be a fan and get dressed up at home. See all 4 of my boys in their Jag attire, aren't they cute? Tonight the Jaguars took on the Pittsburgh Steelers in the first set of Playoffs, it was a close game, all the way to the end, but we won so we're headed to the next round of Playoffs - Go JAGS! Please pray for Tristan's continued strength and please pray for us as we face a new day tomorrow.

Friday, January 4, 2008

Day 33 - Every ounce counts

Okay, I may have spoken too soon over the last few days when I said Tristan was sleeping really good at night! Last night his apnea monitor went off once but he only slept from 12-2:00 am, yes that's 2 hrs., so I held him from 2:00-6:00 am until he fell back asleep, what a long night, I'm not complaining by any means - every minute I can look at Tristan's face is worth any amount of sleep lost. As soon as the sun came up Tristan was ready to go to sleep and he slept until 12:00 noon, now that's the life isn't it? The excitement for today? Our Hospice nurse came at 3:00 pm to check on Tristan. She said he looks really good AND he has gained 2 oz, we are so proud of him!!!!! He was 4 lb. 4 oz. when he was born and then he dropped to 3 lb. 10 oz. by the time we left the hospital, so we've been trying to put some weight on him by changing his formula from pre-mix to powder (it has more calories) and it's working, he now weighs 3 lbs. 16 oz., around here every ounce counts. After dinner tonight we spent family time together and Tanner held Tristan for about an hour - oh how he loves his little brother! Please continue to pray for Tristan's strength and please pray for us as we face a new day tomorrow.

Thursday, January 3, 2008

Day 32 - Still Christmas at our house

Tristan had another good night and his apnea monitor didn't go off at all. He is starting to sleep more at night time and stay awake more during the day time, although there are still nights, like 4-6 am last night, that he is VERY ALERT and cries until I pick him up and then he just lays there quietly in my arms looking up at me. Now those moments are priceless and ones I wish would never end, this brings tears to my eyes every time! The excitement for today? Not much really. We spent most of the day taking down all of the Christmas decorations except the tree. Christmas has always been our favorite time of year so we don't take our decorations down until the first Sat. of January but we're 2 days from Sat. and I'm not ready yet. When we found out we were pregnant in April we called Tristan our "Christmas baby"(Due date was Dec. 20th) and then once we found out he had Trisomy 18 we said that, if he made it, Tristan would be our "Christmas miracle", well he did make it to December 3rd so he was definitely our Christmas miracle and whats better than that is we were able to celebrate Tristan's 1st Christmas with him, something we never expected to be doing! So this is, by far, the most precious Christmas we've ever had and a Christmas we will never forget so I'm just not ready for the season to end plus I want to keep taking pictures with Tristan beside the tree, the tree we decorated with hopes and dreams of bringing our miracle baby home! So, even though the Valentine decorations, Easter decorations and bathing suits are already in the stores, it's still Christmas at our house and honestly don't know when we will take it down. Oh well, who says Christmas has to be over on December 25th right? Please pray for Tristan's continued strength and please pray for us as we face a new day tomorrow.

Wednesday, January 2, 2008

Day 31 - Winnie the Pooh and Tigger too


Tristan had another really good night, his apnea monitor didn't go off at all and he slept very well, of course I think between the bath and all the pictures with his daddy and brothers (in their matching "doggie" PJ's) it made him very tired. The excitement for today? When Trayc was at the store this afternoon he bought Tristan a Tigger outfit, he said he couldn't resist. It's like the Mickey Mouse one I bought 2 weeks ago, it's velour so it's very soft and warm which he really needs today - the high for the next few days is in the 40's, fortunately it's back to the mid-70's by the end of the week. We dressed Tristan in his new little Tigger outfit and he had a photo session with Winnie the Pooh this time! The boys think it's fun to dress Tristan up and take so many pictures. I know it may seem as though we are going to the extreme with all the different dress up/photo sessions but I believe one day we'll be so thankful we did all of this. I also believe it allows us to have fun no matter the diagnosis (T-18) - hey it keeps us laughing, having fun and making lots of memories as a family!!!! Please pray for Tristan's continued strength and please pray for us as we face another new day tomorrow.