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Friday, August 6, 2010

2 steps forward, 20,000,000,000,000 steps back....

Note to cant really be at the last stage of grief, acceptance, when there is still a possibility that you have to start the process all over again....

I just never ever ever ever ever thought I would hear those words again, those words that I thought were behind us, those words that will cripple even the strongest of human beings, a doctor telling us yet again., "he might not make it". Yesterday they gave him a 50/50 chance, and just like that my sons fate is determined by the flip of a coin, heads or tails, its just anyones guess. I just cant believe we are back here again, but this time it is even worse. We have clocked in 5 and a half months with our baby. We have got to hold him, smell him, touch him, sing to him, read him books, rock him to sleep, breast/bottle feed him, look into his sweet little eyes, hear his beautiful little cry, adore his sweet little pout, and just love him silly. His little adorable personality has shone through; he likes it when one of the nurses plays him country music(much to my chagrin), he hates and spits out his formula but loves straight breast milk, he looks out of the corner of his eye when he is trying to sleep to make sure you are still there, he loves being held and screams when he is put down, he loves when you make goofy faces, he stares intently at you when you are talking to him about your day, he looks up through the blinds wondering what is beyond his little NICU world, he has everyone wrapped around his little finger and then some. As you can imagine we are truly devastated, and completely in shock as we just never thought we would be back in this horrible place, especially with as many strides as we have made, it is just plain unfair.

On Tuesday, I came in at night and Thurston just wasn't looking right. His eyes were glassy, he sounded congested, and his liters went up to 3. Everything kind of happened so fast, just a blur really. I actually went to go visit a friend who just had a baby in the same hospital and when I came back Thurston was put on the cpap. I had called Chad earlier and said I was going to spend the night just to watch him and see how he progresses. At that point we were concerned but not overly worried. We thought maybe he was working too hard at breathing and needed a little break. It was getting late, and the doctor told me to go lay down for a bit(they let me sleep in one of the rooming in suites) and she told me she would come get me if she needed to update me on his progress. She had said there was a possibility they might have to put him back on the oscillating vent but she would wake me up if that happened. At around 3 in the morning she came in the room and told me that he was indeed on the oscillator, and not only that, it looked as though he caught something, something that was pretty bad and that she felt he was very sick as he was on the highest oscillator settings at 100 percent oxygen, thats the most support a baby can be on. She put him on every antibiotic known to man for safe measure. She told me that it was probably best to call Chad and have him come up as she was not sure how Thurston was going to do which is code for...."he might die so you better have your husband come in so that he can say his goodbyes"...we have been there before but to hear it again at this stage was just too much for me to handle. The nurse tried calling him but he didn't answer. I told them I could drive home to get him and they said there was no way they were going to let me drive. They called the police to see if they could drive by the house and ring the doorbell. Still no Chad. I kept thinking,"oh my god, the oven got left on or the furnace is broke and they are dying of carbon monoxide poisoning". I began panicking and told them I had to go home. By now it was close to 5am. At that point Thurston was on 100 percent oxygen but not getting any worse and was critical but stable. I told them I just wanted to go home. they gave me a taxi voucher so I wouldn't have to drive. I waited and waited outside but the taxi never showed so I finally just said fuck it and took the car home, I just had to make sure Chad and Viola were OK. I got home around 6am and Chad and Viola were fine. Somehow, Chad left the phone downstairs, again, not realizing how grave our situation was and was able to sleep through the doorbell. I crashed with exhaustion. Everything just seemed so surreal, so like a bad nightmare, I just couldn't believe this was happening all over again.

Fastforward to today, Sunday. Right now Thurston is still fighting off a bacteria gram negative bug(one of the most virulent strains) and has pneumonia . He is still in critical condition. He began having seizures a few days ago and they are not sure what is causing them. Could be any number of things, he has had a slight fever but nothing over 101 so could be febrile or could be something else. He has been on every medication, sedative, antibiotic, and now seizure medication. It is too much to list here. Right now my very good friends Janut and Jim are in town helping us out with Viola. Somehow they just came at the right time or I probably would be going insane. I am sure there are a million details left out. I will try to keep everyone updated but for right now he is still in critical but stable condition and they have been able to wean his oxygen settings a little bit but things just change too quickly for me to keep up with. Thank you for your continued prayers and thoughts and I just hope my little man has some fight left in him, and I hope I do too.


  1. My girl, so many are thinking about and praying for our sweet little man...I pray for God's hand to touch him and heal him, and to comfort you and Chad in this torturous journey you have been on, and the strength to keep going. I will come whenever you want me. I'm so grateful to Janet and Jim. Love, Mommy xxoo

  2. Love you sis...being praying best I can

  3. sending you a big hug from next door. Keep fighting lil T!

  4. Thurston you are never far from my thoughts. Keep fighting sweet baby boy.

  5. So unfair. I just cant even fathom what you guys are going through but please call on me if needed. I mean it. Take care of yourselves so that you can keep taking care of that lil man.

    xoxo Andrea

  6. Donna and Chad

    Ning and I are thinking about you guys. We read your blog often and really hope everything stabilizes soon. We can't imagine how hard this must all be, but our thoughts are with you from Thailand.

    Bryan and Ning

  7. I have been thinking of you all and praying hard. you are right-it just is not fair. I do not understand why some people get such an overabundance of obstacles.
    Thurston is lucky to have you as his Mommy. Your love for him is so beautiful and true. I can not wait to know as much about Natalie as you do about him.
    I am glad to hear they were able to come down on his O2 a bit and hope he turns the corner very soon.

    Much love to you and your family...


  8. Donna-

    I've been thinking about you and your family constantly. Life is so unfair. I never knew how unfair until this NICU journey. Thurston has proved he is a little fighter, and I believe he will get through this as well. I can't imagine how devastating this must be after such a long journey. You are a wonderful mommy and beautiful person. I pray for strength for you as I know it is so hard to remain strong amongst so many trials.

    Sending you lots of love,

  9. Sending lots of love, health and prayers

  10. Donna, reading you post brings tears to my eyes. Thurston is sooooo lucky to have you. You love him so deeply and know him so well already. You are in my thoughts and prayers every day. Mike, Carly, Lilly and Effie's too. WE love you guys and hope Thurston gets better soon.


  11. sweet Donna, my love and prayers are with you and sweet baby Thurston. I love you, you are an amazing mother.