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!!!!