Monday, December 31, 2007

Day 29 - New Year's Eve party




Tristan slept very well last night and we were able to sleep between the 3 hr. feedings so it was great! Tristan had a good day. It is so hard to believe he is 4 weeks old today, the weeks are flying by so quickly now. The excitement for today? Tanner and I went to a party shop and he picked out decorations for Tristan's birthday party, because it's New Year's Eve we decided to use that as the party theme. We bought a balloon, 5 party hats, a banner and whistles. We also went to Target and I bought Tristan a Fisher Price Itsy Bitsy Bouncer seat. This is something I have wanted to do for the last 2 weeks but have been so afraid to do but today I just felt like I really needed to do it. With a normal baby it's so easy to buy, buy, buy, however with Tristan I have held myself back although in my heart I have wanted to buy him everything. This is the second thing I have bought him, the first was the Mickey Mouse outfit a few weeks ago, so obviously it was very exciting to buy my sweet precious baby boy something else new!!! After dinner tonight we had Tristan's birthday party, took lots of pictures (as you can see Tristan was dressed up , sitting in his new bouncy seat and ready for the party - he even had his own whistle!), we did our own fireworks outside and now we are just minutes away from watching the Times Square ball drop and counting down to a new year, the YEAR 2008. We've had a day filled with fun and celebration. Please pray for Tristan's strength and please pray for us as we begin a new year tomorrow!

Sunday, December 30, 2007

Day 28 - A day with Grammy and Grandpa


Tristan had a really good night until his 4:00 am feeding, for some reason he became very fussy and was blowing little bubbles out of his mouth. We assume it was gas and that particular feeding just didn't sit right with his stomach so we gave him some Mylicon and he settled down and slept until his next feeding. His coloring looks really good and it has not changed since Thursday night, so we are very thankful about that! The excitement for today? My parents came over after church, brought us lunch and stayed until 6:00 pm so they could hold and love on Tristan. We had a very sweet time together and took lots of pictures. After they left we spent the evening watching a movie with Tanner. Please pray for Tristan's strength and please pray for us as we face another new day tomorrow.

Saturday, December 29, 2007

Day 27 - He only wants his mommy

We had a rough night last night, the longest so far. Tristan's apnea monitor went off 6 times so between that and the every 3 hours for feeding, neither one of us slept. By 7:00 am I told Trayc that I needed just 1 hr. of good sleep, so we switched sides of the bed, I pulled the covers up over my head and was ready for some sleep. Well, 5 minutes into my sleep time Tristan started fussing and by 15 minutes into my sleep time he was very, very upset and crying!!!! Trayc said, "I'm trying honey", I said, "I know, but let's just switch back", He said, "He only wants his mommy". What do you think happened just as soon as I got back on my side of the bed and Tristan saw me?? Your right, he stopped crying, closed his little eyes and slept until his next feeding at 10:00 am., of course so did we, wow, what a long night! When we finally got out of bed this morning I said, "I really miss your mom, do you think we could fly her back today so we can get a few good nights of sleep, like 8-9 hrs. straight?" Trayc laughed. Seriously though, although it would be great for her to come back or my mom to stay at night, WE need to be here alone, WE need to be the ones staying up all night, WE need to be the ones taking care of Tristan - no one else, because this is all we can do for him and we do not know when the last time might be for us to have the incredible opportunity to feed him, hold him, rub his head, comfort him, change his diaper, etc. I would feel so guilty, at this point, if someone else was here helping and Tristan passed away while I was sleeping - our sleep can wait, our precious baby boy needs his mommy and daddy right now. Tristan had a great day, his coloring did not change but his apnea monitor went off 2 times. The excitement for today? Nothing! I mean nothing at all, I literally stayed in my P.J.'s all day - which was a great feeling, Trayc did a few things around the house and Tanner and Tayden played together. It was just one of those days you need to have every once in a while. We listened to Christmas music during dinner tonight and then we spent a relaxing night as a family. We are planning on getting to bed earlier than normal tonight in case we have another long night. Please pray for that Tristan's apnea monitor will not go off tonight, please pray for his continued strength and please pray for us as we face another new day tomorrow.

Friday, December 28, 2007

Day 26 - Living only for today

Because of the problems with Tristan last night, I felt like I should hold him all night, pray over him and closely watch him to make sure his color didn't change again. Fortunately, his color did not change, he slept very well and his apnea monitor only went off once. The excitement for today? Simply that Tristan made it through the night and is still with us today. Yes, it's that simple. We have not taken one day for granted while on this "Trisomy 18 road" however there's just something about believing last night might be "the end" that renewed our hearts and minds and reminded us why we live only for today and why we live in the moment. Tristan had a great day and I pretty much held him most of the day. He was very alert which is unusual, he normally sleeps all day and is awake all night but since we put him on the oxygen 24 hrs. a few days ago we have continued to see him sleep really good at night and then be more alert during the day. After last night being so rough, it was so exciting and comforting to see Tristan's sweet little face and his eyes wide open looking back at me as to say, "I love you mommy". We still listened to Christmas music during dinner, because we promised Tanner we'd celebrate Christmas until January 1st, and then we had another fun night of playing with more of Tanner's new Christmas toys. Please pray for Tristan's strength and please pray for us as we face another new day tomorrow.


Thursday, December 27, 2007

Day 25 - Emotional night

Again we took turns watching Tristan, to make sure the oxygen tube didn't fall down, he slept very well and his apnea monitor did not go off at all. Hospice came today to check on Tristan and said he was continuing to do well. The excitement for today? He has gained 2 oz., we were SO EXCITED!!!! We switched him from pre-mix to powder, per the doctor, because it has more calories which should help him gain weight, so we are hoping the weight gain is due to the changing of the formula mix. Hospice also brought the tape that will hold the oxygen tube on Tristan's face, this will definitely make it easier than holding the tube under his nose all night and allow us to feel like we can close our eyes without being afraid the tube will fall down. As you know from the temporary post we did on Monday, our computer crashed Sunday night therefore we spent most of today recuperating the important things (1000's of pictures). After dinner tonight we were taking pictures (we're picture people, as if you can't tell) and we removed the oxygen tube for just a few minutes, because the cord wouldn't reach across the room, and Tristan's color started fading to pale white and then gray. We quickly used the "blow by" on level 8 and it took more than 5 minutes for his color to return back to normal. After his color stabilized we decided to end the picture taking, take him upstairs and put him in bed with us. Obviously with all of this, it was the beginning of a very emotional night for me. As we sat in the bed holding Tristan I was crying like I haven't cried since August. Although I have had some emotional moments, overall I have really been strong since September so I guess tonight was the night ........ all the emotions hit me at once and they were so mixed. Emotions of gratitude that the Lord allowed Tristan to be born alive, thankfulness for the Lord giving us so much more time than we ever expected, complete fulfilment as I held my 3rd miracle baby boy in my arms, in awe as I looked at him thinking he looks so normal (and so much like Tanner when he was born), guilt for being so selfish because I want MORE TIME, sadness as my heart was crying out "this isn't fair, I can't do this, I can't let go of him" and reality - the gripping reality of this disease which means we only have Tristan for a short period of time. When I found out I was pregnant I felt like our family was so complete with Tristan and yet the reality of this completeness is temporary, which is so hard for me to accept right now. I know without a doubt that the Lord, himself, chose us to be Tristan's parents and for that I am grateful and I also know THIS is our story, the Lord's plan for our life, however, it's still hard because everything is great with us and our family of 5, the day-to-day is so much fun, we feel like a normal family, we are definitely living in the moment and enjoying every day to the fullest and most of the time I honestly forget the reality! However, I am reminded, and those feelings are quickly shattered, when Tristan starts changing colors like he did tonight and I get scared that maybe this is it, maybe this is the end, maybe tonight is the night and it's heart-breaking because I am not ready to let go and know I will never be ready to let go - what mother would be? It was one of those emotional nights that you want to crawl under the covers, go to sleep and wake up the next day and it be better. Although I could not crawl under the covers because Tristan was laying beside me, I did lay beside him, rubbing his little face, praying and asking the Lord to give me the comfort I need as I am being flooded with all of these mixed emotions, I need to enjoy and concentrate on the "here and now" and not be caught up in the sadness and reality of this disease. Please pray for Tristan's color change, please pray for Tristan's continued strength, please pray for me and all the emotions I am feeling right now and please pray for us as we face another new day tomorrow.

Psalm 61 says: "Hear my cry, O God; listen to my prayer, From the ends of the earth I call to you, lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the foe. I long to dwell in your tent forever and take refuge in the shelter of your wings, For you have heard my vows, O God; you have given me the heritage of those who fear your name. Increase the days of the king's life, his years for many generations. May he be enthroned in God's presence forever, appoint your love and faithfulness to protect him. Then will I ever sing praise to your name and fulfill my vows day after day."

Wednesday, December 26, 2007

Day 24 - Play Day

Again we took turns watching Tristan to make sure the oxygen tube did not fall down, he slept very well and the apnea monitor only went off once. Although we are awake every 3 hrs for Tristan's feeding we were actually able to sleep in after his 6:00 am feeding - wow, this was great and certainly needed! Tristan had another really good day and his color did not change at all, hopefully the oxygen 24 hrs. is helping that. The excitement for today? We opened all the boys' new Christmas toys and played with them, because of the 10 yr. age gap we had a variety of toys to play with, everything from Thomas the Train to a RC skateboarder. I think it's so much more fun to play with all the toys now, as adults, than it was when we were younger - then again they never had all these kinds of cool toys when we were young. We listened to Christmas music tonight during dinner and then we made Christmas cupcakes, it was fun but so messy, we had green icing everywhere - including Tayden's face. Please pray for Tristan's continued strength and please pray for us as we face another new day tomorrow.


Tuesday, December 25, 2007

Day 23 - Tristan's 1st Christmas




Although we had another long night because we took turns watching Tristan, to make sure the oxygen tube did not fall down, he slept very well and his apnea monitor did not go off at all. We have noticed that he sleeps a lot better with the oxygen and he is not as restless. The excitement for today? IT'S CHRISTMAS!!!!! As I have said before, I only look at today and do not pray for more than that, however, the last few days I have specifically been praying that the Lord would allow Tristan to live long enough for us to celebrate Christmas with him - again He answered our prayers and we made it!!!! This was a day I never believed we would share as a family of 5, Tristan's 1st Christmas! Tanner ran into our room at 7:00 am and said that Santa had come so he got Tayden up and they both jumped in our bed to see Tristan and tell him "Merry Christmas", mommy had all 3 of her boys in her bed, what more could any mommy want? We all went downstairs to see what Santa had brought, the boys opened their presents, we ate breakfast and then at 1:00 pm all of my family (grandparents/parents/sister and her family) came over. We had so much fun today and Tristan got lots of hugs and kisses from all his relatives and we took lots of pictures (Above: the last picture is Tristan's card to mommy). After everyone left we sat on the couch and watched a Christmas music concert on TV. What an unforgettable day. By far, this was the greatest day we've had since Tristan was born and I believe it will be one we will look back on, for years to come, and be so thankful we were able to share it with Tristan, his 1st Christmas. Please pray for Tristan's continued strength and please pray for us as we face another new day tomorrow.

Merry Christmas from our family to yours....
Trayc, Yvette, Tanner, Tayden and Tristan Hostetter

Monday, December 24, 2007

Day 22 - 22 candles lit for Tristan




We had another long night because we took turns watching Tristan to make sure the oxygen tube did not fall down and get caught in his mouth or around his neck, Hospice is bringing some special tape for his face sometime this week. We were expecting a call back from the geneticist however we received a call from one of his associates in that he is out-of-town for the holidays. She said that the change in Tristan's color is probably "the change" we had been told to look for, to keep Tristan on the oxygen 24 hrs. a day and that the geneticist would give us a call later in the week. Besides his color change that only happened Sat. and Sun., Tristan has been doing so well, he is now at 21 ml of formula and ready to graduate to the next size feeding syringe and his demeanor is still the same (wide-eyed and very alert AT NIGHT). Although we know each new day draws closer to the end, it is so very, very hard to hear someone say that this is probably "the change"! We look forward to speaking with the geneticist at the end of the week for his personal opinion. Tristan is 3 weeks old today and because we've been at home every day since Tristan was born and the fact that Christmas is tomorrow, Trayc and Tanner went Christmas shopping together for a few hours and then we spent the rest of the day as a family wrapping last minute gifts and getting the house ready for Christmas tomorrow. Tonight we listened to Christmas music while we ate dinner, we made a Christmas ornament that said "Day 22, Tristan, We love you, Daddy, Mommy, Tanner and Tayden, Dec. 24, 2007" and then we had our own candlelight service because we were not able to attend our church's candlelight service. We sat around the table and listened as Trayc read the Christmas story from Luke 2, then we took turns lighting 22 candles, one for each day that Tristan has been with us so far (Tanner came up with the idea to arrange them in the shape of a "T" to represent Tristan) and after the last candle was lit we took turns praying and thanking the Lord for the past 22 days. It was a very sweet time and a night we will always remember! We took lots of pictures and then we helped Tanner and Tayden get the cookies and milk ready for Santa Claus. Please pray that the oxygen will help Tristan so that his color will not change, please pray for continued strength for Tristan, please pray that Tristan will make it through Christmas Day (huge prayer request!!!!!) and for us as we face another new day tomorrow.

Sunday, December 23, 2007

Day 21 - Baby Dedication at church

We had a rough night last night. Tristan's apnea monitor went off 3 times during the night but just like always he started breathing again. Of course at 3:00 am, his favorite time to wake up, he started fussing and I rubbed his head and did everything I normally do, but I didn't put him in our bed, he kept fussing and Trayc said, "You know what he wants don't you? he wants to be in mommy's bed like he is every night". What do you think he did when he got in our bed? Your right, he quit fussing and went right to sleep until his next feeding at 6:00 am. Okay, maybe I have spoiled him just a little bit. Around 3:00 pm yesterday we noticed Tristan's skin quickly changed colors from his normal, medium complexion, to a very pale white so we immediately gave him oxygen and his color slowly started changing back. We called the Hospice nurse and she said it could be that he was just in a deep sleep and breathing swallow and wasn't getting enough oxygen so she advised we put the oxygen tube in his nose and leave it on for atleast the next 24 hrs and to closely watch him. However, this happened several more times during the night and this morning so we are going to leave the oxygen tube on him until we speak with the geneticist. We have a telephone conference with the geneticist tomorrow to see if this means we need to put the oxygen tube on him 24 hrs a day and/or is this "the change" he told us to look for back at our meeting on December 13th. I will be honest, it has been a little emotional for me since this started happening yesterday because it is hard to see his color change (to white/blue) and not think that maybe this is the end. I realize we have been given so much more time than we ever prayed for and more than alot of people with T-18 babies but he is still my precious baby boy, we have fallen deeply in love with him every day and the thought of losing him is extremely hard. We are hoping to have some answers after the telephone conference tomorrow, maybe it's just simply he needs to wear the oxygen tube all the time, we don't know. On to more cheerful things - the excitement for today? We had the incredible opportunity to dedicate Tristan in church this morning. We had a baby dedication service at the hospital, just 2 hours after Tristan was born, because we did not know how long we would have with him. As the weeks have gone by, this has become a big desire of ours, to stand before our church family and dedicate Tristan to the Lord just like we did with Tanner and Tayden after they were born AND we wanted our church family to see the baby they've been praying for since August and see our family's miracle, he is alive and has been with us for 21 days!!!! I cannot describe how proud I felt as I stood there holding Tristan before the Lord and before our church family. This journey began back in August and there I stood today, holding Tristan in my arms. I was so overwhelmed with thankfulness to the Lord and as our pastor was praying at the end of the dedication I could not stop the tears from running down my face because I was silently praying "Thank you Jesus for choosing us to be Tristan's parents, for allowing me to be Tristan's mom, for giving us the past 21 days, to be standing here today with him in my arms giving him to you and no matter how hard this journey might be sometimes I thank you so much for bringing us this far and know you will continue to carry us every day." We left immediately after the dedication but let Tanner stay at church with my parents and grandparents and then he spent the entire day with my parents. My parents brought Tanner home at 5:00 pm and stayed until 9:00 pm holding and loving Tristan. I am so thankful that all my family lives here in town and we are able to see them all the time. Please pray specifically for Trayc and I as we are going to take turns watching Tristan all night, for Tristan's apnea spells and color change, please pray for our conversation with the geneticist tomorrow, please pray for me regarding the emotions I'm feeling right now and please pray for us as we face another new day tomorrow.

Saturday, December 22, 2007

Day 20 - 3 boys and Santa Claus


Tristan had a good night last night. His apnea monitor did not go off at all but he still has his days/nights mixed up so I held him from 3-5:30 am rubbing his little head and talking to him. During my pregnancy, and every day since Tristan was born, I look only at today not tomorrow because we are not promised tomorrow therefore I do not allow my mind, nor my heart, to think about anything other than today! A few days ago, Trayc said that Tanner was afraid Santa Claus would head back to the North Pole before he was able to tell him what he wanted so we needed to make plans to take Tanner and Tayden to see Santa Claus at some point. I was telling Trayc I know we need to but I just didn't want to take Tanner and Tayden without Tristan because it doesn't seem fair, he's a part of our family now and I don't want a picture without Tristan in it. We decided to wait until this morning to see how Tristan was doing before making a decision. So, the excitement for today? We made our FIRST OFFICIAL FAMILY OUTING to see Santa Claus. This is another one of those moments I never believed we'd do together. We bundled (and completely covered Tristan up), went to see Santa Claus, took pictures and videoed and let the boys give their wish list to Santa Claus. Although it was definitely the fastest Santa visit we've ever had (we didn't want to expose Tristan to too many germs) it was by far the sweetest picture we've ever had made with Santa Claus - our 3 boys. This was a special day and Tanner was so excited and proud of his new little brother, we can see it in his smile and hear it in his voice every day (I'm so glad we home-school, it allows him the opportunity to be home with us every day and spend unlimited time with Tristan)! Please pray for Tristan's continued strength and for us as we face another new day tomorrow.

Friday, December 21, 2007

Day 19 - More diapers?

Tristan had a good night last night. His apnea monitor only went off once but he started breathing again immediately. We have realized one thing for sure, Tristan definitely has his days and nights mixed up, this reminds me of being pregnant with him. I wouldn't feel him kick much at all during the day but just as soon as I would lay my head on the pillow he would start kicking and kick MOST of the night which kept me awake, of course I never minded because it just reminded me that my precious baby boy was alive. But what's great now is at night instead of laying there feeling him kick I can just reach over and get him out of his bassinet, hold him in my arms, rub his sweet little face, look into his eyes that are "wide open", talk to him and pray with him, this is what I have done the past 2 nights and it puts him right back to sleep. Tristan had another good day today. Trayc told me this afternoon that we needed to get more diapers for Tristan and I said, "more diapers?". He said, "Yes!". This would be the first pack of diapers we've actually bought because the hospital sent a pack home with us, so to me this means Tristan has lived long enough to go through a whole pack of diapers! Just another miracle on this road of uncertainty that we are so thankful for. With a normal healthy baby you just take things for granted like diapers, formula, wipes, washing little clothes in Dreft detergent, folding baby clothes and baby blankets, etc., but knowing today might be all we have, you take NOTHING for granted! It becomes a privilege and honor to buy more baby necessities and wash dirty baby clothes. I have stood at the washing machine so many times since we came home from the hospital 2 week ago and said, "Thank you Lord for allowing me the opportunity to wash Tristan's little clothes". Tristan had another good day. We had a very quiet family day so the only real excitement was that we got to buy more diapers - and for us that's exciting in and of itself! As promised, we celebrated Christmas tonight by listening to Christmas music while we ate dinner and then we all sat on the couch and watched a family movie. Please pray for Tristan's continued strength and pray for us as we face another new day tomorrow.

Thursday, December 20, 2007

Day 18 - Using "white out" to cover my pain

As you know, Trayc's mom has gone back to Tennessee so we began our first "night hours" last night. Tristan did really good. His apnea monitor only went off once but he started breathing again immediately - the alarm is so loud it scares him so I think it wakes him up and he starts breathing again - it definitely wakes us up!!!!! This morning I was in the laundry room and I looked at the wall calendar and noticed it said December 20, but what really caught my eye was the "white out" all over the calendar. See, today was my original due date. I did the white out after we came home from the high-risk doctor's office on August 15th (when we found out Tristan had Trisomy 18 ). I was so devastated with all of the overwhelming information, the comment of "incompatible with life" and statistics we had just been given and I felt totally helpless and was hopeless. I remember falling to my knees below the calendar that day (which was in our bedroom at our old house) crying and saying out loud "Why?", "How could this happen to us, all we want is more children?", "How will the Lord ever use this in our life?", "How will Tristan ever make it to December?" , "How do I go on living every day knowing our baby will not live?" So, to protect my heart and cover up any future pain when I looked at the month of December, I quickly got out the white out and whited out the date, Tristan's full name and the words "3rd miracle baby" I had written at the bottom of the calendar back in April. As I looked at it today my heart was broken because I could see I was so sad, so devastated, so overwhelmed with grief therefore I never could have seen how the Lord would use this in our lives for the good. Although I will never be able to answer most of the questions I cried out that day, I do know that our precious baby boy DID MAKE IT to December, he was born alive, he is here with us in our home, he makes our family a family of 5 now and we just finished celebrating DAY 18. He truly is our family's 3rd miracle baby, maybe not how I would have chosen it to be, but this is the Lord's plan for our family which I have to believe with all my heart is the perfect plan for us. I see the Lord's hand on our lives more than I ever have before. I am daily praying that the Lord will use Tristan's precious little life, through our family, to reach out and minister to others that are hurting, that feel helpless and hopeless like I did 4 months ago. My hearts greatest desire, at this time, is that our story will give all the girls on this "Trisomy 18 road" (especially my internet friends, Kenzie Stanfield and Kim Summons - see their blog links under our family picture) renewed hope, the courage to stay close to the Lord, to trust in Him even on the hard days and although no one knows what the Lord's plan is for their baby, the Lord is faithful and He will carry them every step of the way. Tristan had another great day and we are looking forward to another night of family fun. As promised, we celebrated Christmas by listening to Christmas music during dinner and then we played a board game with Tanner, while Tayden chewed on the game pieces! Please pray for Tristan's continued strength and for us as we face another new day tomorrow.

Bible notes: In the Book of Job we see a good man suffering for no apparent fault of his own but Job's story does not end in despair. In Job's life we see that faith in God is justified even when our situations look hopeless. To be unshakable, faith must be built on the confidence that God's ultimate purpose will come to pass. God alone knew the purpose behind Job's suffering, and yet He never explained it to Job. In spite of this, Job never gave up on God - even in the midst of suffering. He never placed his hope in his experience, his wisdom, his friends or his wealth. Job focused on God.

Wednesday, December 19, 2007

Day 17 - Disney at our house





Trayc's mom took her last "night hours" last night. I am so grateful to have had Trayc's mom here at our house for the past 11 nights. We greatly appreciate all the hours of sleep she gave up so that we could sleep and so that she could take care of her new grandson. Trayc's mom left after lunch today, so you know what that means, Trayc and I are on our own for the "night hours", reality begins tonight (ha ha)!!! We spent the day doing things around the house like painting Tayden's room and installing more shelving in his closet - his room was the only thing not finished before Thanksgiving. As promised to Tanner, we celebrated Christmas tonight, but we did it a little different - we brought Disney World's "Mickey's Very Merry Christmas" to our house, bet no one knew that was possible did they? Every December, since Tanner was 4, we would take him to the "MVMC" in Orlando. Obviously not able to make it this year we decided to have our own. We dressed all 3 of the boys in their Mickey shirts (Tristan wore the outfit I bought him Monday night - isn't it cute?), hats, Disney toys, listen to Disney Christmas music and we took lots of pictures - we had it all, including Tayden and Tanner acting like they were in the parade! It was a great night of "Disney" fun. Please pray for Trayc's mom and Grandma as they travel back to Tennessee and pray for their hearts as you can only imagine how hard it was for them to leave Tristan with the future being so uncertain, please pray for Tristan's continued strength and please pray for Trayc and I as we begin taking the day and night hours, please pray for us as we face another new day tomorrow.

Thank You: To our families


There are not enough words to express to each one of you how much we have appreciated your love, your support, your encouragement and your prayers since August 15th. As you well know, we have experienced every emotion possible while on this journey - shock, devastation, sadness, exhaustion, happiness, excitement, gratefulness and thankfulness. However, through it all every one of you have been there for us. We all came together and I believe have, by far, experienced one of the greatest miracles the Lord has ever performed in our families - the miracle of our precious baby boy, Tristan, being born alive and already making it today, DAY 17. This journey would not have been the same without each one of you being a part of it. Everyone has played a different role, no one's greater or less than the other, just everyone being there for us by giving of their time and their hearts . We thank you and we love you all very much:

  • To my Mom & Step-Dad: Thank you, Mom, for every time I called to cry (no matter the hour of day/night), for your daily encouragement, for making Tristan's bow for his tree, for Tristan's 2 "Baby's First Christmas" ornaments, for Tristan's 8 baby outfits, for Tristan's baby blanket, for my beautiful hospital gown and robe, for my beautiful black suit for church, for staying at the hospital 2 nights in a row to take care of me, for all the ice chips you feed me day/night, for all the wash clothes you held on my head when I was so sick, for driving us home from the hospital, and for coming to the house to spend time with Tristan. Thank you, to my step-dad, for coming to the hospital every day, for bringing mom back again at night so that she could take care of me, for all the lunches/dinners you brought to the hospital for Trayc, for all the days you took Tanner out to lunch so he could "get out", for buying the Peterbrooke Chocolate basket for our nurses, for following us home from the hospital with the boys in your car, for taking Tanner to the park last week to play ball and for loving me like I was your own, since I was a little girl.

  • To my Dad & Step-Mom: Thank you, Dad, for changing your work schedule (last minute) to be in town for 2 weeks, for calling me weekly to make sure I was okay, for all the tears of joy you cried when Tristan was born, for standing by my bedside and holding my hand and for being the Dad every girl needs! and thank you for being an incredible Dad to Trayc with all of your love, personal calls just to him and helping him months ago make the "necessary plans". Thank you, to my step-mom, for buying groceries for 2 weeks so we wouldn't have to leave the house, for hand-preparing 7 nights of dinners, for the weekly cards since August, for Tristan's baby dedication outfit and for loving me like I was your own, since I was a little girl. And thank you to both of you for buying Tristan's 1st birthday cake so that we could have his 1st birthday party!

  • To my Memaw & Grandaddy: Thank you both for coming to the hospital every day, for reminding me over and over that "Jesus loves you and He will take care of you", for constantly telling me how proud you are of us, for taking Tanner to lunch so he could "get out" of the hospital, for calling me 2xs a day since we've come home and for coming to the house to hold and love your great-grandson.

  • To my sister Kim (her husband Toby and their children Kaitlyn & T.J.): Thank you SISTER, for all the days/nights I called you crying, for encouraging me, for helping me buy maternity clothes, for staying positive about Tristan all the way to the end, for being in the O.R. with Trayc and I - I never could have made it without you sitting beside me and rubbing my head telling me everything was okay and making sure I stayed awake long enough to see Tristan born, for being at the hospital every day and then going home at night to take care of your children plus Tayden (I know this would be ALOT for most, but as always you do it without any problem, like it's so easy!), for buying groceries, for walking our puppy every day/night, for having the house decorated with flowers and balloons when we came home from the hospital, and for bringing me the FIRST cup of coffee I've had in months!!!! Thank you, Toby, for bringing Kaitlyn and T.J. to the hospital right after Tristan was born and for taking off work 2 days to take care of the children so that Kim could be at the hospital with me. Thank you, my sweet "Katie Kate", for all the times you asked if Tristan was kicking so you could feel my tummy move (it always made me smile), for coming to the hospital to see your new cousin, for all of your sweet prayers you prayed for Tristan (the Lord answered your prayers princess, he's here!!!) for Tristan's cute little blue bear, for the beautiful homecoming flowers in the "pink" vase and for putting up with ALL THESE BOYS in the family, maybe one day you'll have a girl cousin, if not we'll just keep spoiling you!! Thank you, T.J., for all the times you asked when Tristan was coming out of my tummy so that you could play with him (it always made me laugh), for all of your sweet prayers you prayed for Tristan, for buying Tristan's "My First Christmas" Winnie the Pooh outfit and for the beautiful homecoming flowers in the "blue" vase.

  • To my Step-Sister Jennifer (her husband, John, and their children Haley, Molly, Aubrey & Jack): Thank you, Jennifer, for leaving your family for a week to come in town for Tristan's birth, for being my "personal" nurse every day, for making sure the doctors/nurses were properly taking care of me, for all of your nursing advice, for constantly assuring me that everything was okay and for coming at the last minute and holding my hand as I laid there crying about Tristan having to be under the Billi-lights and not being able to hold him for 24 hours. Thank you, John, for allowing Jennifer to be here for me, for rearranging your work schedule so that you could take care of the children while she was gone. To my 3 nieces and 1 nephew, thank you for praying for your cousin every night since the beginning.

  • To Trayc's Mom & Grandma: Thank you, mom, for your weekly cards before Tristan was born, for staying at the hospital with us 2 nights, for the beautiful Trisomy 18 Foundation bracelet with Tristan's birthstones on it, for staying at our house 11 nights to take care of Tristan so that we could sleep, for your daily love and encouragement since we came home from the hospital, for helping me learn all of the feeding tube and apnea monitor procedures, for reading the entire monitor manual and writing out your own notes so that we could better understand them. Thank you, grandma, for coming to the hospital and for spending 2 days/1 night here at our house. And, thanks to both of you for coming all the way from Tennessee, knowing this is a hard trip for you to make.

  • To Trayc's brother Jason, (his wife Donna, and their children Avery, Taylor, Abbie & Payton): Thank you, Jason, for covering everything at the office so that Trayc can take off time to be with our family. Thank you, Donna, for helping Jason cover everything at the office so that Trayc can be off, for bringing the delicious brownies and muffins to the hospital for everyone and for the fresh fruit, yogurt smoothies and magazines for me. Thank you to my 2 nieces and 2 nephews for coming to the hospital and to the house and daily praying for your new cousin, Tristan . A special thank you to Taylor, for her precious comment on the blog entry on Day 14.


(Pictures provided by our sweet photographer, Peggy McAteer, with the "Now I Lay Me Down To Sleep" organization)

Tuesday, December 18, 2007

Day 16 - Smiling at mommy

Trayc's mom took the "night hours" last night. Tristan had another very restless night so we gave him glycerin and it seemed to work again, therefore this is something we will start doing regularly along with adding Mylicon in his feeding tube. His apnea monitor only went off once, which meant he stopped breathing for 20 seconds, but he immediately started breathing again. Tristan had another great day! It is so sweet when I talk to him and he turns his little head, looks at me and smiles - he knows his mommy! Trayc finished his 3-day job so that he can be home with us for the next few weeks. I didn't feel good today, still having more hours of tiredness than hours of energy (the doctor said this is expected due to my complications in the hospital) so I spent the day resting and just awaiting for that burst of energy to hit. As promised to Tanner, we celebrated Christmas by listening to Christmas music during dinner and then we sat on the couch, spent time with Trayc's mom because she is leaving tomorrow afternoon and then we went to bed early. Please pray for Trayc's mom as she takes her last "night hours", please pray for Tristan's continued strength, please pray for us as we face another new day tomorrow.

Monday, December 17, 2007

Day 15 - Our family of 5


Trayc's mom and Grandma took the "night hours" last night. Tristan had a very restless night which meant we were all up, most of the night, trying to comfort him! His apnea monitor didn't go off but he just seemed unhappy and uncomfortable. We called the on-call Hospice nurse and they advised we give him a glycerin suppository in that his bowels might be backed up which is causing him to be uncomfortable. We did and he seems to be back to his normal little sweet self, especially after mommy held him for 4 hours. Trayc went to work for a few hours this morning and then Hospice came by to check on Tristan. She said that he was doing fine and that it was common for some babies to have bowel problems so we could give the glycerin every day, if needed. Tristan had a really good day though. The excitement for today was that we met with our photographer, Peggy McAteer, from the NILMDTS organization to look at the Christmas pictures she took here in our home last week. They were all so good and I was just so excited as I sat in her studio looking at my family of 5, I never dreamed we'd have a Christmas picture taken with the 5 of us, just another incredible miracle the Lord has given us on this journey. We will cherish these pictures forever!!!!! On the way home we stopped at the store to get a few things and guess what I did? For the first time I bought Tristan something. I know that might sound a little weird that I haven't bought anything before now but the truth is - I HAVEN'T. The desire has been there but since we found out about Tristan on August 15th I just couldn't buy anything because I was scared he'd never wear it. Since we brought Tristan home from the hospital my family has started buying things for Tristan (they knew "no gifts before he was born"). I guess I was just so excited about seeing our family pictures, so thankful for the past 15 days and feeling confident that I was finally able to buy my precious baby boy something. I rushed over to the Baby Dept. and started looking. I could have bought something really dressy but I saw this cute little Mickey Mouse outfit and knew the boys would love it, plus they have Mickey shirts so I figured Tristan needed one to match his big brothers. As promised, we celebrated Christmas tonight by listening to Christmas music and then we sat on the couch and enjoyed spending time with Trayc's grandma because she was leaving tonight. Please pray for Trayc's mom as she takes the "night hours", please pray that Tristan will have a better night sleep than last night, please pray for Tristan's continued strength and pray for us as we face another new day tomorrow.

Sunday, December 16, 2007

Day 14 - Acting normal

Trayc's mom took the "night hours" so we were able to get another good night sleep, I'm really going to miss these 8 hrs of straight sleep when she leaves. Fortunately the snow is coming down in Tennessee so we've talked her and Grandma into staying at least until Wednesday. Tristan had a good night, except that his apnea monitor went off at 4:19 am which means he stopped breathing for 20 seconds so Trayc's mom quickly unwrapped him and stimulated his feet, as we were told to do. He immediately started breathing again and didn't have any more problems the rest of the night. We originally had a pulse oximeter but on Thursday the geneticist advised that we switch to the apnea monitor because it would be more helpful to us. It monitors his heart rate and his breathing pattern but you don't see any numbers. Honestly, this is better for me because I concentrated on the numbers all day and just as they would start dropping, which happens when they sleep, I would get scared. So, Friday night we received the new apnea monitor. This is the first time we've had an alarm since Tristan was 2 days old, in the hospital, so we are thankful for that. Tristan had a great day today. I cannot say it enough, he has stolen my heart, especially when he turns his little head and looks at me with his dark eyes and smiles. I remember back in August when the "high risk" doctors said that Trisomy 18 babies are severally retarded and have lots of problems as they are considered "incompatible with life" (I'll never forget those words) therefore he would never act like a normal baby! I say "Really?" to that today. So far he is acting just like a normal baby. He eats every 3 hrs., he sleeps, he has dirty diapers, he cries, he sucks on his paci, he smiles and most importantly he loves his mommy to hold him. I also believe he knows the difference between each of us and although he may never be able to speak a word, he says so much with his little eyes. I know he must feel how much we all love him, after all we completely SMOTHER HIM WITH KISSES ALL DAY LONG, so why wouldn't he understand and feel that? I am so thankful the Lord is allowing Tristan to act like a normal baby, it is so comforting to us and it is great for Tanner to feel that normalcy too. I believe that when Tristan is no longer with us we will cling to these precious "normal baby" moments and they will help soothe our hurting hearts. Tonight Tanner went to our church with all of my and Trayc's family because one of his cousins has a part in the Christmas concert so we stayed home and spent time with Tayden and Tristan. After the concert Trayc's grandma came back to our house and is staying with us tonight to spend some time with Tristan. Please pray for Trayc's mom and grandma tonight as they take the "night hours", please pray for Tristan's strength and that he will not stop breathing again and pray for us as we face another new day tomorrow.

Saturday, December 15, 2007

Day 13 - Mommy's night out

Trayc's mom took the "night hours" so we were able to get another good night sleep. Tristan had another great night too! I just cannot believe we are on Day 13. The Lord is blessing us with so much more time than we ever asked for - 13 days NEVER seemed possible to us back in August. Tristan truly is our Christmas miracle and "our little fighter". Before I kiss Tristan goodnight I pray with him, I tell him I love him so much and that Jesus loves him. Sometimes I feel like I say the same prayer every night but I just don't know what else to say. My heart is overflowing with such thanks to the Lord as I am still in awe that Tristan is actually here with our family, in our home, but how many different ways can you say all of that? I know the Lord sees my heart and understands that although right now it's the same prayer every night, it comes straight from the purity of my heart:

Dear Jesus, Thank you, thank you, thank you for another wonderful day with Tristan. Thank you for allowing Tristan to make it to Day __. Thank you for entrusting this precious baby boy to our family knowing we would honor and glorify you in all that we say and do. Jesus, I am asking for another day with Tristan and I am still believing in the miracle of healing for his little body, however that might be. I pray that you will use our story as a testimony of your miracles and as an encouragement to all the girls who come behind me on this "Trisomy 18 road" and that Tristan's days with us will give them a renewed sense of hope as they continue in their pregnancy and the uncertainty of their own babies lives. Jesus watch over Tristan tonight. I thank you and praise you for all that you are doing in our family. Amen.

Trayc went to work today and then my grandparents came over this afternoon to see Tristan, you know he got lots of love and kisses from them, no one loves like a grandparent! The excitement for today? Mommy got out of the house, finally! True, I went to the doctor's appt. on Thursday but that's not really getting out of the house. Wow, the world still keeps going on around you doesn't it? I couldn't believe all of the Christmas decorations and lights in our neighborhood, they were beautiful - yes, I have definitely been in the house too long! I bought all the Christmas presents on my list, the day after Thanksgiving, wrapped them and put them under the tree because I knew I'd be home for awhile and not able to drive for at least 2 weeks but I never got around to buying the boys their Christmas outfits (I usually do this in November). I don't know, every time I'd walk into Hartstring Clothes for Children, I would get so sad and not be able to focus so we'd just leave. I buy the boys church clothes there so Tanner and Tayden can match (Tanner loves matching Tayden) but at the end of my pregnancy I just couldn't do it, my mind kept saying, "Tristan probably won't leave the hospital, he won't be here at Christmas so you'll never get to dress all 3 boys up for Christmas Day, you'll never make it to church for Christmas", Satan still tries to work on us all the way to the end, doesn't he? So with great excitement tonight, and obviously only 9 days left until church on Sunday the 23rd, I knew I needed to buy the boys their outfits, hey at least they're on sale now, right? After that we went to Target, that's all this girl needs to have a good night out - shopping at Target!!!! Trayc and I had fun getting out for 2 hrs. and spending some time alone but I was, at the same time, counting every minute we were gone and very anxious to get back because I felt guilty for leaving Tristan and was afraid something might happen and we couldn't get back in time. It was late when we came back home, Tanner and Tayden were in bed, so we took Tristan to our bed and spent 3 hrs. holding him, loving on him and praying with him. Please pray for Trayc's mom as she takes the "night hours", for Tristan's continued strength and for us as we face another new day tomorrow.

Friday, December 14, 2007

Day 12 - Tristan loves his paci


Trayc's mom took the "night hours" so we were able to get another good night sleep. Tristan had a great night also. Trayc's mom said that when she has Tristan at night she reads her Bible, prays with him, sings Jesus Loves Me and then prays for the rest of the night. I am so thankful for a Godly Christian Mother-In-Law . She has not only been a HUGE help to us since we came home from the hospital but she has been a constant emotional support for me every day with her love, her words of encouragement and her words to me from scripture she is reading, it has meant so much to me. She was supposed to be leaving on Monday but we have been trying to talk her and Grandma into staying longer. We just keep praying for snow on top of the mountain (in Tennessee) so they'll have no choice but to stay - from the weather report it looks as though it is already happening!!!!! So, hopefully we'll have them at least until next Wednesday or Thursday. Trayc worked all day today so his mom and I took turns taking care of Tristan and she taught me how to do all of the feeding tube stuff. It's about a 6-step process so I'm "in training". Trayc learned all of it at the hospital but because I had such a difficult delivery and 5-day hospital stay I was not able to learn and since we got home last Friday, I have not been able to walk up and down the stairs (per doctors orders) all day, just once down at night and back up. The excitement for today was that Tristan took a pacifier (aka "paci" per Tanner and Tayden). We are so proud of him, this is such an accomplishment! We have noticed that he turns his head and sucks on his feeding tube all the time so we mentioned it to the geneticist yesterday and he said that we should try a preemie pacifier and a preemie bottle and see if he'd take it. The bottle feeding started off great, he was sucking the nipple without any problem but then we quickly realized he was not swallowing the formula so we used an aspirator and removed the formula from his mouth, therefore we're obviously going to stick to the feeding tube. We knew from research that most Trisomy 18 babies have the ability to suck but not swallow but it was worth trying. We then tried the pacifier and he loved it! He is so cute just sucking away, actually it sounds like he's smacking (By the way, the little doggie in the picture was given to Tristan by his big brothers, Tanner and Tayden. We bought Tanner one when he was born and then he bought Tayden one when he was born, so they bought Tristan one - it's a family tradition!) Tonight my mom and step-dad came over. My mom held Tristan for 2 hours while my step-dad took Tanner up to the playground, here in our neighborhood, and they played ball and played on the swings and monkey bars. It was great for Tanner to have some time away and able to spend it with his grandpa and just have fun, away from the reality of everything going on here at home - we have to keep reminding ourselves that although he has dealt with all of this so well since August, he is still just an 11 yr. old boy who loves and needs to have fun. Then my parents took Tanner to dinner and shopping. They came back with 2 preemie outfits and 2 "Baby's First Christmas" ornaments (1 for the family tree and 1 for Tristan's tree). Because we didn't know if Tristan would be born alive or come home we had asked, early on, that no one in the family buy him anything because I didn't want to have it at the house and I definitely didn't want to return anything - that would just break my heart, so now that he's made it this long my family is having fun buying a few things for Tristan. Again, as promised to Tanner, we celebrated Christmas by listening to Christmas music while we ate dinner and then we let Tanner spend time downstairs with Trayc's mom and we spent time upstairs in our room holding Tristan and taking pictures. Please continue to pray for Trayc's mom as she takes the "night hours", please pray for Tristan's strength, please pray for snow in the mountains (ha ha) and pray for us as we face another new day tomorrow.

THANK YOU to everyone who commented on our blog (or personally emailed us) re: our appt. with the geneticist yesterday. It was such an encouragement to Trayc as his heart was so broken! Yes, there are great doctors out there, but the Lord Jesus Christ is still and will always be in control. He is the only one who truly knows Tristan's time here with us and although we can appreciate their wisdom we cannot let it become our main focus or we'll miss out on the here-and-now and we cannot do that, we must continue "living in the moment" and enjoying every day He has given us with our miracle baby. The comments and prayers mean so much to us on a daily basis as we continue to travel this uncertain road.

Thursday, December 13, 2007

Day 11 - Memorizing Tristan's face


Trayc and I took the "night hours" last night and let his mom sleep so that she could help me today and Trayc could return back to work for at least the next 2 days. Tristan had another great night, however, Trayc and I are very tired - Tristan has his days and nights mixed up so just as we were ready to turn off the lights he decided that he was ready to wake up, be BRIGHT-EYED and very alert and then he started crying. Of course, I can't just let him lay there sad, after all, he just wants his mommy to pick him up and love on him, okay that's my explanation to Trayc, but whatever it takes right? So I laid in the bed and held him for 2 hours until he finally fell asleep, all the while just looking at him, rubbing his cheeks and trying to memorize every precious little feature on his face, praying and thanking Jesus for allowing us another day. Trayc got up this morning and went to work but at 10:00 am he decided to make a phone call to Hospice to see if they were able speak with a geneticist we were referred to by our neonatalogist while at the hospital. Hospice said because this particular doctor was the top geneticists in town (He specializes in Trisomy 18 children) it would be very hard to get an appt. before March but we might be able to get a phone conference with him sooner than March. We thought March? We are only promised today with Tristan we can't wait that long! So Trayc decided to call the doctor's office directly and when he introduced himself to the medical assistant she said that the doctor was very familiar with our case and that he was anxious to meet with us and they had a cancellation for today at 2:00 pm. Can you see the blessing here? I truly believe the Lord allowed a cancellation for today because He knew we needed to talk to the doctor today, in person, not wait until March. We had never considered meeting with the geneticist before now, but when we came home from the hospital I told Trayc my biggest fear now is that we've been sent home with a Trisomy 18 baby and that's all we know. There are so many different things I've read on the Internet and received tons of information from other moms, like treatment for "blue spells" and the apnea monitors, etc. that no medical doctor has ever told me about, so as a mom I feel a little misinformed at this point and I don't ever want to feel like I missed doing something because we just didn't have the knowledge from a doctor. I mean, do we need to do any heart tests regarding the .4 mm hole we know he had back in August? Do we follow-up with any specialist other than Hospice? Is there any kind of treatment we should be doing to avoid the "blue spells"? Can we leave the house? Can we have visitors? What signs of distress do we look for? There are just so many questions now that we have Tristan home and I just wanted someone to be upfront and honest and tell us what to look for and expect from here because this is a road we've never traveled before. Trayc and I made a joint-decision early on in our pregnancy that Tristan would never have any kind of surgery or invasive procedure because we know the Lord is in control of this and He has given us Tristan as our miracle baby for whatever time He gives us, but at the same time I want to make sure we are fully aware of everything we need to know for as long as we have him. Trayc left work, came home, got Tristan and I and we headed to the appt. We met with the doctor for an hour. He was very nice, sensitive to our situation and yet at the same time honest and straight forward. He said that although Tristan's little features do look normal, he is a Trisomy 18 baby. He could tell by his little fingers that his hands have always been clenched which tells him everything to do with Tristan's little brain and how it is functioning. He said that he believes we will have a little time with him but just as we have already seen a little routine beginning to develop, we will begin to slowly see a degression in him over time, not just an automatic passing away. I guess for me we've been to so many pregnancy appts. that I have learned to never go in with high expectations, therefore I was not expecting any more or any less than what the doctor said today and nothing really caught me off guard. On the other hand, my sweet, precious, optimistic, Godly Christian husband has been earnestly praying since August 15th that Tristan would be the exception to the rule and to the Trisomy 18 statistics, that he would be like some of the stories we've read on the T-18 Foundation that lived for years! So imagine his heart as the doctor is talking to us. As the doctor left the room he literally broke down. I looked at him and said, "What's wrong?" He said, "I feel like the rug was just pulled out from under us and we lost any chance of having him longer, I just thought that because he looks so perfect and normal on the outside that there might just be a chance". Now, if you're a wife and have ever seen your husband break down and cry you will completely understand how I was feeling in that moment, all of a sudden I felt all of his pain and disappointment and it was crushing! Trayc has been the stronghold, the rock, the one who has held this family together emotionally since we found out about Tristan on August 15th. I have cried more tears than you can count and he has just held me in his arms, loved me and encouraged me day after day. On the way home he said, "I'm sorry for breaking down and for not being strong, I know it is so selfish of me to want more than the Lord has already given us, I just don't know how I'm going to let go of him?" I told him that I do understand and that I don't know how we'll let go either, and that it's okay that he is allowing himself to feel all of this. I believe the Lord has made it possible for him to be so strong because I needed him to be that for me since August, but today I was feeling great and strong and although the news was straight forward and very hard for me to hear and to accept, I was okay and I would be strong for both of us today. As promised, we celebrated Christmas tonight by listening to Christmas music during dinner and then because of the emotions we were feeling we let Tanner spend some time with Trayc's mom downstairs and we went upstairs, got in bed and held Tristan for 3 hrs. just looking at him and again trying to memorize every feature on his face, holding hands, crying bittersweet tears, talking about our entire pregnancy, and thanking the Lord for given us another wonderful day with our little miracle! Please pray for Trayc's mom as she takes the "night hours" tonight, please pray for Tristan's strength and MOST IMPORTANTLY please pray for my sweet husband, Trayc, as he deals with all the emotions he is now allowing himself to feel and that the Lord will just comfort him in the most incredible way!!!!

Wednesday, December 12, 2007

Day 10 - Enjoying every single moment

When I woke up this morning I realized the date was December 12th, this was originally supposed to be the day Tristan was born but due to the extra 4 weeks of fluid in my stomach and Tristan's stomach measuring 6 weeks behind the doctor was afraid Tristan may not make it until the 12th. I am so glad we moved it up and that we have already been able to share 10 days with him. The Lord is just blessing our family in the most unbelievable way. During my pregnancy we prayed that if God's plan would be better served by taking Tristan's little life early then we would accept that and if His plan would be better served by allowing him some time with us then we would honor and glorify the Lord in all that we did. Therefore, in obedience and thankfulness to the Lord we are enjoying every single moment we have with Tristan and thanking Him for it all day, as we remain in a prayerful spirit. Tristan had a great day and he is just amazing us as he becomes a little more alert each day. I had a follow up doctors appt. at 8:30 am this morning. My doctor said I was doing great - no fluid in my lungs and my hemoglobin level was 11.0, it was 8 in the hospital when they ordered the 2 blood transfusions, so this was great news. Now I'm just waiting for my energy to kick in, the doctor said it could take at least 3-4 more weeks due to the amount of blood loss, I just thought "new blood" meant I'd feel like a new person, immediately! The excitement for today was that we received the pulse oximeter from Hospice which will alarm when, and if, his heart rate slows down, he stops breathing or when his oxygen level gets too low. We had a Respiratory Therapist come to the house and teach us how to use it. I am hoping it will allow me to be a little less afraid to walk away from Tristan, at this point someone is watching him 24 hrs. a day. I realize it has the tendency to go off even if it's not "an emergency" but I would rather it alert us and there not be a need to rush to assistance than to not know what is going on. I know there is going to come a time I must completely release that fear and trust the Lord to take care of Tristan but it's just to soon for me right now not to worry 24 hrs a day that he might stop breathing and I couldn't help him. This brings back so many memories of when Tanner was born 11 yr. ago, he was 4 weeks early and only weighed 5 lbs. Although he was a healthy baby we still had him sleeping between us for the first 6 weeks so that we could watch him breath, so as you can imagine my fear is so much greater with Tristan. During my daily quiet time I am asking the Lord to calm my fears and allow me to not worry as much. As promised to Tanner, we celebrated Christmas tonight by listening to Christmas music during dinner and then Tayden was so tired from today that he went to bed early so Trayc and I spent some time upstairs with Tristan while Tanner and Trayc's mom spent time quality time together downstairs. Trayc and his brother own a tile, stone and granite company so fortunately he has been able to take off work for the past 10 days, however he is going to work for the next 2 days so we are taking the "night hours" tonight and allowing his mom to sleep so that she can help me tomorrow. Please pray for us as we take the "night hours", please pray that Trayc's mom will sleep well tonight, please pray for Trayc's mom and I as we take care of Tristan without Trayc tomorrow, please pray for Tristan's continued strength, and please pray for us as we face another new day tomorrow.

Thank You: To our doctors/nurses

As we drove to the hospital, Baptist South of Jacksonville, Florida, on Monday, December 3, 2007 at 9:30 am we were full of excitement as we knew THIS would be the day we had been longing for and praying about since August, the day we would finally be able to hold our precious baby boy, Tristan, and yet at the same time for me there was a great fear - the fear of what the day would hold. After we found out about Tristan having Trisomy 18, I began praying specifically for 2 things in regard to the hospital: (1) that we would have the "big room" at the end of the hallway(I couldn't remember the room #) so that all of our family members could be in one room at the same time with plenty of space and so that we would be completely isolated from all of the other new parents with healthy babies and (2) that the nurses taking care of us would completely understand our situation and would sympathize with us, when and if needed. Our expectations were more than met as we entered the 3rd floor Labor & Delivery. We were greeted by a group of nurses with smiling faces saying "Good morning" and then they introduced us to our first nurse, Jen, who was so sweet as she talked to us, calmed my fears and walked us down the hallway to our room. She said, "You'll love your room, you have the big room which you will need with all of your family" (you couldn't miss all of my family walking behind us). I said, "Is it the end room?" She said, "Yes, you know the room?" I said, "Yes, we've seen it before but more importantly I've been praying for this room since August 15th!" She said, "You have?" This was the beginning of what was the most incredible hospital stay we've ever experienced. We've had both our boys at Baptist with the same doctors and with nice nurses but nothing compares to what we experienced for 5 days last week. On our wedding day back in October 1990, we had a couple sing the song "Holy Ground". When we look back on our hospital stay, from the moment we entered the doors of the 3rd floor Labor & Delivery and were met by our nurse Jen, to the moment our nurse, Rani, wheeled me outside to our car and hugged us all goodbye, this is what it felt like to us. Here are the words to that song:

As I walked through the door, I sensed His presence
and I knew this was a place where love abounds
for this is the temple, Jehovah God abides here
and we are sta
nding in His presence on holy ground.
We are standing on holy ground
and I know there are angels all around,
let us praise Jesus now,
we are standing in His presence on holy ground.
In His presence, there is joy beyond all measure,
at His feet peace of mind can still be found,
if you have a need I know He has the answer,
reach out and claim it for we are standing on holy ground.
Let us praise Jesus now,
we are standing in His presence,
we are standing in His presence,
we are standing in His presence on holy ground
.

  • To my doctors: Dr. Wilford E. Paulk, we appreciate all of your support and encouragement as we met with you every 2 weeks from August 15th to Nov. 29th for sonograms and appts. We realize we came to our appts. with lots of questions and sometimes asked the same questions over and over, week after week, trying to comprehend all that we would be facing in the days ahead and for all the times I was emotional, thank you for understanding and for your soft, sweet reassurance as we traveled this uncertain journey with our precious baby boy. The Lord truly blessed us with you and we hope you know how much we love and appreciate everything you have done for us and for our miracle baby boy, Tristan! AND to Dr. Joseph C. Greenhaw, thank you for being so sweet and comforting from the moment they took me into the OR for the c-section, through all of my unexpected complications, for helping me understand the need of having 2 blood transfusions and calming my fears about it, for joining hands with us and our nurse, Lisa, as she prayed regarding the transfusions and for being excited and sharing in our joy on the last day as we prepared to take our precious baby boy, Tristan, home. The Lord truly blessed us with you and we hope you know how much we love and appreciate everything you have done for us and our miracle baby boy, Tristan! May the Lord continue to bless both of you as you do what the Lord has called you to do, help bring life - especially miracle babies like Tristan - into this world.
  • To our sweet Christian nurses: Lisa, Katie, Brenda. Our hearts are overwhelmed with gratitude for what you three mean to us. Your DAILY support, love, hugs, tears (when we cried), your prayers with us and especially your prayers while you stood over Tristan means more than we can ever express. We truly believe the Lord placed each one of you in our room - Room 336 - for a purpose, His purpose, and we appreciate you allowing the Lord to work through you and to use you in our lives and the lives of our family members while we were in the hospital for 5 days. As you know, I had a lot of emotional moments, and moments I was scared when Tristan had his "blue spells" and nervousness when I was told "it was imperative" I receive 2 transfusions and then add my physical weakness to all of that, yet every moment you were all there encouraging me and loving me never pushing me to do more than I could do and never expecting me to emotionally act in a way that I could not. May the Lord continue to bless each of you as you do what the Lord has called you to do, taking care of new moms and new babies - especially miracle babies like Tristan. We hope you three and the entire 3rd floor Labor & Delivery staff enjoyed the Peterbrooke Chocolate basket, just a little thank you gift from Trayc and I and my parents, The Makepeaces.
  • To everyone else we came in contact with during our stay (registration personnel, nurses that were not personally assigned to us, neonatalogists, dietary deliveries, etc.): Thank you for your sweet spirit every time you entered our room, for understanding our situation and for sharing in our joy and excitement of our miracle baby boy, Tristan. It was greatly appreciated!

Tuesday, December 11, 2007

Day 9 - Opening up my heart



We've made it to Day 9 and Tristan has had another great day! We have increased his feedings to 19 ml every 3 hours. He is now able to maintain his body temp. for about 2 hours while he is out of his bassinet. There are about 3 hours, off and on, during the day that he is VERY alert, with both his little eyes wide open and he just looks all around, it is so comforting to me - how do I feel such overwhelming love being returned back to me, through Tristan's little eyes, when he can't even speak a word? The only way I know to answer that is the Lord Jesus has completely opened up my heart to feel all that I am feeling. Before Tristan was born I was afraid to allow myself to really feel much because I was so scared of being vulnerable with my heart and afraid that if I did I would be devastated if I never had the opportunity to hold him, love him and tell him through my words and through my touch how much I loved him and was so proud of him for being our "little fighter" and making it to the end. But since he was born last Monday I have, day-by-day, allowed my heart to become open to all that I feel and it is just amazing! We didn't really have much excitement today we just kind of relaxed and rested all day. Again, as promised to Tanner, we celebrated Christmas by listening to Christmas music while we ate dinner and then, so that Trayc's mom could get some more rest, we went upstairs and just spent time holding Tristan, taking lots of pictures of the 3 boys and talking about how thankful we were that the Lord has given us these past 9 days. Please continue to pray for Trayc's mom as she takes the "night hours", please pray for Tristan's strength, and pray for us as we face another new day tomorrow.

Monday, December 10, 2007

Day 8 - Tristan is one week old




Happy Birthday to Tristan - he is one week old TODAY!!!!! It is so hard to believe that we entered the hospital doors exactly one week ago, not knowing what we would face in the week ahead and yet here we are celebrating and rejoicing that our precious baby boy has made it 8 days. These have been the most incredible 8 days of our lives. Our hearts are just overwhelmed with love for Tristan. Although I would have never chosen this road for myself I am so thankful that the Lord trusted Trayc and I to be the parents of this very special little boy and has allowed us the opportunity to see and feel the awesome power of His miracles. Tristan had another great day and we increased his feeding to 18 ml. The excitement for today was that Peggy McAteer, the photographer from "Now I Lay Me Down To Sleep" organization, and her wonderful assistant Mark, came to our house tonight at 5:00 pm to take family Christmas pictures. When we first met with Peggy back in October, to schedule our prenatal and our hospital pictures, she had also mentioned that she would love to come to our house and take family pictures of us when we got home. Honestly, I never believed it would happen - I guess I just didn't have enough faith to believe we'd ever leave the hospital with Tristan, even though I so badly wanted to. So, imagine the joy in my heart as we sat in our home, in front of our Christmas tree and took family pictures tonight, not as a family of 4 but thank you Jesus for allowing it to be a family of 5!!!!!!! The pictures will be ready for us in a few days and we will make Birth Announcement/Christmas Cards with those pictures. After they left we took some more family pictures just so we could have them to look at right now (that's what we posted above). Again, as promised to Tanner, we celebrated Christmas by listening to Christmas music during dinner and then we just stayed at the table for another hour enjoying a sweet time of sharing, eating dessert and watching Tanner draw some artwork out of a gift Trayc's mom gave him. Please pray for Trayc's mom as she continues taking the "night hours" so that we can sleep, please pray for continued strength for Tristan and please pray for us as we face another new day tomorrow.

Sunday, December 9, 2007

Day 7 - The bassinet once forgotten



Oh, it is so good to have Trayc's mom staying with us to take the "night hours"!!!!! My entire nine months of pregnancy was spent with many, many restless nights with the last 2 months of my pregnancy only getting about 4 hours of sleep a night due to the size of my stomach (4 weeks of extra fluid). Then in the hospital, due to all of my complications, I only got about 3-4 hours of sleep a night so basically I have not had a great night sleep since March - that's a long time. I didn't realize how exhausted I was until I went to bed at 11:00 pm and slept until 9:00 am. this morning! Obviously I felt very rested today (Thank you to my sweet mother-in-law). Tristan is doing so good. He had another great day. His feeding increased from 15 ml to 17 ml and he is maintaining his own body temp. Today he was very alert - he opened both eyes real wide and followed us as we moved, it was priceless! He makes this little sound when he's hunger or has a dirty diaper that honestly sounds like a little kitten and Tayden, our 1 1/2 yr. old, runs over to Tristan (with one hand stretched out) touches the blanket and says "kitty", he's right that's exactly what it sounds like. I never said the word "BABY" to Tayden during my pregnancy because first I knew he didn't understand I was pregnant and second was afraid that if Tristan didn't make it then it would just break my heart to hear him say the words. But since Tristan was born alive and we were at the hospital for a week all of our family kept saying "See the baby?" Well, this morning when I woke up I heard him in his room talking and he said, "Baby" "Baby" "Baby" (3 xs in a row). It was soooo cute and music to my hears!!!! We were not able to go to my grandparent's house last night and pick-up the bassinet so today Trayc picked it up. Therefore, the excitement for today was that we were able to set up the bassinet once forgotten. I never dreamed we'd be setting it up and using it for Tristan, what an exciting moment for our family and truly another miracle the Lord has allowed us to experience. And, again as promised to Tanner, we celebrated Christmas. After dinner the boys changed into their matching "Nascar" P.J.'s, we listened to Christmas music, I sat on the couch holding Tristan and Trayc and the boys sat on the floor so the boys could open lots of gifts from Trayc's mom and grandma and we took lots and lots of pictures. We are just enjoying every minute we have and living "in the moment". Please continue to pray for Trayc's mom as she takes the night hours which allows us to be rested for the next day and for our family as we face another new day tomorrow.

Saturday, December 8, 2007

Day 6 - Relaxing day!


Tristan slept between Trayc and I last night in that we did not have the bassinet here at our house (we had left all the baby stuff at my grandparent's house back in August, not sure if we would bring Tristan home). So, we made him a palate out of Tayden's changing table pad until we could get the bassinet. We took turns watching him all night. He is doing extremely well with the tube feeding, where he was originally at 10 ml in the hospital, he has now increased to 15 ml and has had no "blue spells" since Tuesday. We are still trying to figure things out like how to maintain his body temp. so that he doesn't get too cold, we are used to the hospital warmer being on 24 hrs a day which automatically kept his temp. maintained. We have spent the day just relaxing, catching up on emails, updating our blog with entries/pictures, unpacking from the hospital and taking turns just holding, loving on and praying over Tristan. In our prayer tonight Tanner said, "and Jesus we don't have much to offer to you but we bring Tristan to you and place him at your feet as our offering" and "we thank you for giving us just another wonderful day, day 6, with Tristan". Wow, Tanner's 11 yr. old - just when sometimes you wonder if what we attempt to teach on a daily basis is really sinking in and then he prays like that ... what more could any parent ask for? We are so very, very proud of Tanner for the way he has handled and accepted this entire journey since August 15th. We have known since the beginning that this would be a lot for any 11 yr. old to understand and accept but we have tried and will continue to try and lead, guide and teach him through this time and in the end hope and pray that we have taught him to love, trust and obey Jesus no matter the circumstance and He will bless you more than you can even imagine. Trayc's mom will begin staying with us tonight and take care of Tristan during the night hours so that we can sleep and be prepared and rested for the next day. Please continue to pray for Tristan that we will have another day with him, please pray that we will be able to find an easy way to maintain his body temp., please pray for Trayc's mom as she begins taking care of Tristan tonight and pray for us as a family as we face a new day tomorrow.

Friday, December 7, 2007

Still Day 5 - Celebrating Christmas




Early on we promised Tanner that if we brought Tristan home from the hospital we would celebrate Christmas every night in December. So after dinner tonight the boys changed into their matching "doggie" P.J.'s, we dressed Tristan in an outfit his cousins gave him today , we sat on the couch and listened to Christmas music, the boys each opened a gift and we took lots of pictures. We ended our family's Christmas celebration with having special prayer thanking Jesus for allowing the following: (1) Tristan to be born alive, (2) Tristan still being with us on Day 5, (3) Tristan being able to leave the hospital, (4) Tristan being able to come home and (5)Tristan being able to celebrate our First Christmas with him. We cannot even begin to tell you the excitement we have felt celebrating this evening, although realizing this might be the only Christmas we have with him, we made it one we will forever remember. Please continue to pray for us us we face each new and uncertain day ahead.