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!!!!

18 comments:

Dee Dee said...

Husbands are quite complex, aren't they? Although it seems they try very hard not to be.
Your story has a familiarity to me, although we never walked the T-18 path. We did have a little one with Downs who lived just a short time. It was hard to see my husband hurt, too. And yet the honesty he (like Trayc) showed in his tears blessed me even as it hurt so terribly.
I am so glad your husband loves your baby enough to cry for him. That is not ungratefulness to our father; it is simply grief, and how well our Father knows it.
Praying for you.

Kim (marygracesummons.blogspot.com) said...

Yvette,
I so feel what you must be going through and I cry for Trayc and how he must have felt today. I will keep praying for all your needs and know that our God will meet them. Just keep enjoying Tristan and loving him like you are....God will continue to carry you through this no matter what comes your way.
Praying still.....
Kim

Vicky said...

Trayce and Yvette,
I just wanted to let you know that I check this spot several times every day and I am praying for both of you and for your precious boys. GOD will be faithful to give you EXACTLY what you need as you need it...HE can't be less than HE is. We are praying and lifting you up and asking HIM to wrap you in HIS arms and hold you close to HIS OWN heart every single minute of every day.

Christena said...

If prayers were waves, your whole family would be surfing Hawaiian style! How wonderful it is to hear of each new day that you have with your precious gift, Tristan. Abraham Lincoln once said, "It's not the years in your life, but the life in your years that count." Your little Tristan is so lucky and so blessed, no matter how his time is measured, because of the boundless love that you are wrapping him in. Any of us would much rather be sick and loved, than healthy and alone. And how amazing it is that your tiny little boy has such power as to enrich your lives so profoundly and touch so many, many hearts. Please know that there's an ocean of prayers out here for all of you! Bless you and thank you for continuing to share your journey.

Tiffany Thigpen Croft said...

You are both showing amazing strength and I know only the Lord can give you what you need to get through all of these emotions. Yvette, I am so thankful that God gave you such a sweet, Godly husband. You are a blessing to each other and to those who know you.
God is allowing you so much time because of your obedience to Him because your story is radiating a light out to the world - and all of us are praying for that little ray of hope for you. Keep believing!!!! No matter what is said- God is the ALL Powerful, Healing, Miraculous God!!!!!
Love you, Tiffany

Aunt_Nette said...

I hope you are able to engrave his face to your memory. I know I have prayed for you daily. Even cried at your milestones. Birth. Bringing him home. Etc. What a special baby.

Emily said...

THANK YOU for being so transparent in your struggles. Doing so has been my saving grace. And speaking of grace, as far as the letting go part, God will give you grace for each moment... even those moments you dare not imagine now. Cherish every second, as you are so beautifully doing, and trust the Lord with all your heart with all the rest. You are a precious family of God. He will never, ever fail you. Praise be to Him for the miracle of this child!

Laurie said...

Trayc and Yvette,

I do not know much on this T-18 path but what I do know is that God is holding all of you in His arms as He works out His plan for Tristan's life and for yours. He is in control and He has the last word. Trayc, your love for this little miracle is so beautiful and painful at the same time. It takes a very STRONG man to allow tears to flow from a disappointed heart. I am praying that all of the love he feels from you has healed his little heart. I am praying that the Lord will take this disappointment from you and return the hope to your hearts, knowing that Tristan has never left the hands of the One who has formed him. Praying for peace and comfort and a new hope for all of you today as you celebrate Tristan's life each day.
With God, all things are possible.
Keep memorizing this little baby boy and let God do what He does best, Glorify Himself to us. May your day be blessed more than you could ever imagine in Him.

Laurie in Ca.

Kenzie Stanfield said...

Yvette-

I think that is how the Lord has intended it to be... one can be strong for the other! That's what makes your marriage so strong, and your love for Christ so strong! I will be praying for Trayc as you continue to spend sweet time with him and your little boys. I'm SO thankful that you were able to get in and talk with the doctor! I know how incredibly important that is and how relieved you must feel to at least know what to look for, even if it wasn't what you were hoping to hear!

Love and prayers,
Kenzie

Rebecca said...

Still praying...

lucyimhome623 said...

Yvette & Trayc,

I find that every time I get on my computer I MUST read about Tristan. I am praying for all of your family and only the Lord knows how all of this will turn out. I don't know why men think they have to be the strong one, but Trayc it's O.K. to feel upset and even a little depressed. God did give us emotions for a reason.

Trayc, please tell your mother hello for me. I used to sit by her in choir over 30 years ago. She was acutally sitting next to me when I found out I was pregnant with my second set of twins. We always had fun together.

Keep your chins up and you'll always be looking toward heaven!

Love,
Margaret Dixon

Sue said...

Thank you for your continued teachings on being in the present moment, embracing it and finding the strength to carry on to the unknown. Tristan is teaching us all unconditional love and compassion. Thank you for sharing.

Cathy said...

While we all need the medical community and their input, I know, that you know, only God know what Tristan's path will be and how long his precious journey will be. At amost three years I am still hearing this at our dr. appts. But each day God continues to give her strength. Your family continues to be in our prayers.
Cathy & Annabel

Lynda said...

Yvette & Trayc, I have to say "ditto" to what most are saying right now. I know we all think that doctors are all knowing and have the final word, but they don't!! Doctors come and doctors go, but GOD is never changing and He is the all powerful healer of all healers. I will continue my prayer that God will continue to breathe life into your precious Tristan and I will also continue to pray for both of you. Keep your spirits up and positive thoughts and most of all being faithful to our God. He will take care of you!! Love you, Lynda

Jami Thompson said...

Yvette and Trayc,

I can't imagine having something so precious knowing one day I would have to give it back to God, we are only human and with that comes great attachment to things we love. But even knowing that the future is unknown for Tristan, what an ABSOLUTE MIRACLE it has been every single day. I am still amazed by how much life God has breathed into that little boy!! And I am sooo excited to read about him ( I would love to meet him!!) daily. Tell Trayc that he is the best dad Tristan could ever have. My heart is with all of you. Can't wait to see you again..

Jami, Anna and Tyler

Fern said...

I am praying for continued strength and lots of happiness for all of you.

Tracy said...

I just wanted you guys to know that I was telling my mother all about your family today and how amazed I have been at your faith and trust in God. I gave her the web address to your blog and told her to read up! I know she will be touched and inspired and amazed just as I have been. I can clearly see God in the two of you. I think that is why I am drawn to your blog so much.
I am still praying for your family and wish you the best. Enjoy that handsome little boy of yours!!

caldwell4366 said...

Hostetter Family,

I found about about your family through Henry Luke. I live in TN and just want you to know that your family is in my prayers. I pray that God will wrap his loving arms around you and your family and continue to give you the strentgh and comfort that you need. Children are a true gift from God. May God continue to hold Tristan and watch over him and may you have many days ahead that you can glorify God through your miracle baby! I will continue to pray for your family! May God bless all of you!