Teeny Tiny Truman

This page is all about Truman, born Aug. 8, 2006 to Kara and Ben.

Thursday, August 31, 2006

Unexpected, Unwelcome News

The hospital called this morning to schedule a time for us to sit down and talk with the doctors about Truman's case. We thought the conference was going to be about how to address Truman's intestinal issues. It was instead about a follow-up brain sonogram that was performed yesterday.

Sometime during the last week, Truman suffered an intraventricular hemorrhage, or brain bleed. His prior results had indicated that he suffered only a grade I bleed on the left side of his brain and no bleed on the right. Now, the right ventricle is larger, or "more prominent" in medical speak. Although they cannot see any blood on the right, the size of the ventricle indicates a grade III bleed or at least pressure on his brain to that degree. The news on the left ventricle is worse still. Blood was detected in the actual brain tissue. Although it appears to be a relatively small bleed, it is classified as a grade IV. Because it is in the tissue of the brain, we know that some brain damage has occurred. What cannot be detected with the sonograms is how deep the bleed is.

We have no idea what to expect long-term. As our previous posts have indicated, brain bleeds classified as grade III or IV are considered severe. The doctor told us that because it was a small bleed, there is a chance that it could result in relatively little impact on his life. However, grade III and IV bleeds can also mean serious brain damage. We do not know what to expect at this point. We simply have to wait to know the extent of what happened to Truman's brain, perhaps years. A follow-up brain sonogram will be performed in a week. At some point after that, a MRI will be performed to see if they can determine how deep the bleeding in his brain is and therefore offer more information about what to expect in terms of his future.

As for the intestinal issues, it's been determined that Truman has sepsis, a type of blood infection. The doctors are not sure if that is part of the cause of his inability to pass meconium or perhaps a symptom. Today's bowel xrays also show that the distention in his intestine has move downward somewhat, which means that the "blockage" appears to be moving. Perhaps it is not a complete blockage after all. Right now, due to the infection and the movement in his bowel, they are holding off on any bowel surgery. The current plan is daily xrays for the next five days to monitor any additional movement of the obstruction and to make sure the infection has completely cleared before doing anything that could introduce further infection. This also means that it will be at least another 6 days before he starts receiving milk, possibly longer.

A little more than two weeks ago, we felt extreme joy when we learned that Truman's brain bleed was very minor, the kind that would resolve itself. We had been told that about 90 percent of brain bleeds occur in the first three days of life. We thought we were completely out of the woods, and were not concerned about the remaining 10 percent chance. As often as Truman has overcome the odds to this point, it now appears that the odds have caught up to him. It is very hard to be hopeful at this point.

--Ben & Kara


Anonymous Anonymous said...

I'm so sorry to hear your news. I have been following Truman's progress for a while now and I'm keeping him in my prayers. Think positively, he's so tiny, he's got so much fight and spirit. Lots of love and hugs going your way.

9:11 PM  
Anonymous chris & jeri said...

hang in there guys, we all knew that there would be some hard days, we just expected them in the very first days, we know how hard this is on you all, but both of your families are in this with you, and as you can see, people literally all over the world, it is always darkest before the dawn, we love you

9:13 PM  
Anonymous Anonymous said...

Hang in there, you have been so strong. Have faith that everything will be okay. Because when you look at him and he seems so perfect he always will be to you no matter what.

9:16 PM  
Anonymous Anonymous said...

We send thoughts and prayers your way. Know that people around the world are praying for your little man!

Stay strong Truman...virtual hugs coming your way!

9:32 PM  
Anonymous Anonymous said...

We are praying for Truman. Many times doctors do not know what God knows and we serve a great big God. He has already carried Truman a long way --- His ways are right and good. We are Nadia Renee Pool's grandparents --- we are keeping in touch and praying. George and Rogene Holder rholder@sagu.edu

9:34 PM  
Anonymous Michelle Blackmon said...

Kara and Ben,
I have been keeping up with Truman through your mom here at SSMS. Know that there are many praying daily for Truman, for the doctors, and for Truman's whole family. Keep faith in God's healing hand always.

With love from S.S.,

9:39 PM  
Blogger Michelle Blackmon said...

Kara and Ben,
I have been keeping up with Truman through grandma at SSMS. Know that there are many of us praying for Truman, Truman's doctors, and Truman's family. Always keep faith in God's healing power.

With love from S.S.

9:42 PM  
Anonymous steffie said...

I am so sorry to hear this news. I urge you to hold on your to your positive thoughts as much as you can. I am most definitely praying for you.

9:53 PM  
Blogger Maggie said...

Major hugs coming your way. You are all in my prayers.

Maggie (IV Preemies)

9:59 PM  
Blogger Cera said...

I have been keeping up since I heard about TTT... And I want you to know that I also followed the stories of two other preemies - Ty over and JimandDoni.com and Isacc at SoniaandJong.blogspot.com.... I believe that Ty had a severe brain bleed and Isaac was born at 23 weeks. While it may look terrible, these things may be over come. Hang in there.

10:06 PM  
Anonymous Anonymous said...

Keep that hope, Kara and Ben!! Truman is a trooper and he needs you to keep on hoping and keep on fighting with him! He has SOOOOO many people praying for him, and for both of you.

10:15 PM  
Anonymous Anonymous said...

There are so many people sending you their love and prayers. Keep faith that everything will resolve itself and Truman will be a healthy, happy little boy. All the best.

10:25 PM  
Anonymous Anonymous said...

Kara & Ben,
Who would have thought just a few short weeks ago that such a tiny little baby would bring so many people around the world to prayer? May you be comforted in the knowledge that you, Truman, and his whole family will continue to be lifted up in order that you feel God’s loving grace and presence.

11:41 PM  
Blogger Jade said...

I am from the ivillage '06 expecting club.

I want you to know that Truman and all of your family are in our thoughts at this trying time, and are hoping for the best possible outcome for all of you.

12:16 AM  
Anonymous Anonymous said...

Debbie and I were certainly saddened when we read your latest update, but we're still pulling for Truman to keep up the good fight. We're here for you guys if there is anything we can do or anything you need.

Mike and Debbie

12:32 AM  
Anonymous December '06 Birth Club said...

Hang strong, guys! I'm so sad to hear the news about the brain bleed, but I've been reading about Truman every day and even if you're struggling to feel hopeful, I believe he's got it in him to pull through this. It's amazing how these itty bitty babies can bounce back. My cousin was a 25-week baby and graduated from high school last year. No disabilities. She was born 19-years-ago, and medicine is so much more advanced now. I'm praying for you guys.

2:22 AM  
Blogger cjzben said...

Sending you all the P&PTs I can. I know how hard the NICU rollercoaster ride is but hang in there he is a strong little guy and has come so far already.

I am thinking of you.

Claire (IV preemies)

6:32 AM  
Blogger Kya said...

I can feel you're so devastated from your words, but you know you must take it easy, one day at a time... some days, news are great; other days, not so good. But one battle doesn't mean a lost war ;) My daughter is almost 6 years old and she asks me about "that baby in the box" everyday because she knows he was due a day before her brother; and everyday I tell her he's fighting but I'm sure he'll make it - and she asks the heavens to help Truman too. So you see, there's no way in the world Truman isn't going to be just fine :)

6:56 AM  
Anonymous The Collum Family said...

I'm so sorry for your news. I learned of Truman's storey on iVillage June 06 PG. I am praying for you guys. Stay strong and don't lose hope.

7:58 AM  
Anonymous Anonymous said...

I am praying for Truman and your family. I do not know you but I am sending my love your way.

8:22 AM  
Anonymous Anonymous said...

Truman is a tough little guy who has already shown the world his determination and spunk. Truman, we can all learn a lot from you - keep up the fight!

8:48 AM  
Anonymous Anonymous said...

i am sorry for your unfortunate news my prayers will be with you at this hurdel in your life!!! My first daughter was born at 26 weeks it was very scarey for me but she was very lucky thanks to all the prayers i received from family,nonfamily and friends!!

8:51 AM  
Anonymous Anonymous said...

I'm from DEC 06 Ivillage also...

Wanted you to know that i'm thinking about your difficult journey and praying for Truman every day. I was so sad to read your most recent post, but believe, like others have said, that so many things are possible and that babies are so resilient.

I also want you to know that in times of grief and trouuble, we all lose hope from time to time. Allow yourself to go where you need to go emotionally, don't let anyone tell you that you must "remain postive" all the time.

Thank you for sharing your moving and amazing story with people like me who you've never even met...


9:19 AM  
Anonymous Anonymous said...

I am holding you all in my heart and praying for you every day . Remember throughout all this that many, many people care about you.

9:53 AM  
Blogger JP said...

Big hugs to you all. We will continue to pray for Truman to fight infection and grow stronger every day. And also for your family, that you cling to each other during the difficult times.

10:09 AM  
Anonymous Charlisa said...

So sorry to hear the news. Still praying for strength for you both.

10:14 AM  
Anonymous Anonymous said...

Kara and Ben,
I am so sorry to hear this news. I am from the Dec 06 EC and have been checking in daily to see how Truman is doing. Although a grade IV IVH is scary and upseting, as you say, you don't know the extent of the damage and with a fighter like Truman the outcome could be very good. I believe in the power of prayer and there are thousands of people around the world praying for Truman and your family. Stay positive and have faith.

10:28 AM  
Anonymous Anonymous said...

Hugs to you all, you are all in my families prayers. Truman is strong and a fighter. Hugs to you all.

Paula, San Francisco CA
IVillage April 2006

11:05 AM  
Anonymous Anonymous said...

We are so sorry to hear about this news, and we are keeping you all in our thoughts and prayers. Take care and try to stay strong. You will need it for the fight ahead.


11:16 AM  
Anonymous Jill said...

I have also been following Truman's progress for a while, and am heartbroken to hear about the bad news. I want him to pull through so bad, and think about you everyday.
Fight Truman Fight !
You are in my prayers

12:22 PM  
Anonymous Nikki Sheasley said...

Hi, my name is Nikki. I am from the Jan 06 playgroup on ivillage. I heard of ur family and sons struggle.
I to have an incompetent cervix. And delivered my first son stillborn at 21 weeks because of it. I know how hard living with the feelings and guilt of having an IC even though it is NOT our fault. I posted on ur EC on ivillage, but dont know if u still go there. It is hard after to go back and listen to people complain about a relativily normal preg.
There is a group on Yahoo, Makin Miracles. There is other women that have given birth at 24 weeks and the babys have lived and thrived. That might be a source of encouragement for you. Stay Strong and you and urs are in my thoughts and prayers.
Nikki Sheasley sheasley76@yahoo.com

12:54 PM  
Anonymous Anonymous said...

I am soo sorry to hear about the updated news on your beautiful baby Truman. You both are incredibly strong parents, and you will all continue to be in my thoughts and prayers.

1:25 PM  
Anonymous Kim said...

I am so sorry to hear that! I've been following your story and as a Mom to preemies (twins at 29.5 weeks and a son at 34) I know a little bit about the ups and downs of the NICU, though clearly not to this extent. But God has a way of taking care of his little ones and I know he will take care of Truman. Many hugs and positive thoughts and prayers your way...

1:41 PM  
Anonymous Anonymous said...

Kara & Ben,

Dec 06'ivillager again. I just want you both to know that were all keeping up with truman and are all praying for his full recovery. You guys are amazing pillars of strength, and are so great at updating everyone with all the details of what is going on. Truman is so lucky to have caring parents such as yourselves. He has the whole country praying for him. :) I hope to hear good updates in the future. Its hard to take bad news, but the good news will help you forget you recieved the bad news.

Please take care of yourselves and blow baby truman kisses for us all. :)


2:06 PM  
Anonymous Haley said...

Ben and Kara, we love you! Please let us know what, if anything, you need right now. Cuz Haley

2:53 PM  
Anonymous Anonymous said...

Wow- He has been through so much in so little time! He is a miracle and is obviously here in this world for a reason. He has overcome so many obstacles already. He is so strong! Its amazing someone so tiny can be so strong. Keep loving him. He can feel it and it will help him through this in the long run. Keep your thoughts positive . I know its already been such a long hard road for you guys but have faith that he will make it over the bumps- even the big ones. Thinking of your family every day here!!!!

4:35 PM  
Anonymous Anonymous said...

My son is a 24-weeker born in January who also had PDA ligation, sepsis, and a grade IV bleed. He's now 4 months adjusted age and absolutely normal. Truman *can* still be okay. These will be the darkest days of your life and you'll never forget how you feel right now, but it will get better. I promise.

6:48 PM  
Blogger Shawna said...

You don't know me but I followed to your story through a blinkie made for Truman. I have been reading about his story and progress and just wanted to stop and offer you prayers. Truman is obviously a remarkable baby boy! To be born at 23 weeks gestation and be doing as well as he is, being so feisty and active, he truly is miraculous! I have a friend who had a baby at 25 weeks and he is still doing good a year later but they continue to have their battles as well with weight gain and such. I pray that Truman overcomes all of these obstacles and comes out of it stronger and better. Please know that you have prayers coming from unexpected places. I will also add Truman to my IL's church prayer group. Many hugs, stay strong. Sounds like you have a very strong and determined little man there!


7:01 PM  
Anonymous Anonymous said...

im really sorry to hear that news.
truman has already proved that he is fighter so i will be thinking nothing but positive thourghts!
take care and knw that we are thinking of u.
kainesmum dec exp board

7:38 PM  
Anonymous Jason and Kerri said...

Ben and Kara,

We are so sorry for this most recent news. Please know we are thinking and praying for you all.
Jason and Kerri

8:27 PM  
Blogger Sue and Eddie Hammons said...

Ben and Kara,
God knows your son, Truman, and the plans He has for him -- and you both as his parents. I hope you find encouragement in the note from MW & AW. Every baby is a miracle and no miracle is harder than any other for God, only in our eyes.
Love and Prayer
Sue and Eddie

8:30 PM  
Anonymous Anonymous said...

God's hands are BIG and He holds your baby's teeny tiny hands in His. He holds your hopes and dreams for Truman's future.He holds your fears and tears. Keep hoping. Keep dreaming. Tell Truman God is watching over him.

9:07 PM  
Anonymous Anonymous said...

I'm from the Dec IV board as well. I'm so sorry to hear about this latest news :-( I've been checking your blog everyday. What a little trooper you have to have gone through so much in his start of life.

11:56 PM  
Anonymous Anonymous said...

There are so many prayers going out for your little one. It seems he has such a will to survive that nothing can keep him down. My father was a micropremie (although that was back in 1944 when they weren't called that) he was born at 2 lbs about the size of a Ken doll. Have you this was before the time of medical miracles and incubators.... now he is 62... 6'2" and probably about 230lbs... he was a miracle... and I am sure that your baby will be your miracle... just believe in him, he's fighting so that he can be cradled in your arms... kissed by people who love him so dearly... nothing in this world is more powerful than the love between a child and their parents.... it's pure. Good luck! you are in my prayers

12:33 AM  
Blogger munkeesmama said...

I just found your blog. i am also a mom to a micropreemie born feb 18th of this year. Hang in there and my family will be praying for yours. My daughters site is www.munkeesmama.blogspot.com

4:10 AM  
Anonymous Jen from ivillage Nov moms said...

I am praying today for Truman.

10:10 AM  
Anonymous Megan from Ohio said...

Thinking of Truman every day! Keep your chins up and know your little boy will fight with all he has!

3:26 PM  
Blogger mandy reichek said...

I'm so sorry to hear about the bad news, but it sounds like Truman is a little fighter. Please let me know if I can do anything. You, Ben and Truman are in my thoughts.

11:59 AM  
Anonymous Anonymous said...

Kara, I'm sorry to hear that things could be better healthwise, but it sounds like Truman is a little fighter. Please let me know if there's anything I can do to help. You, Ben, and Truman are in my thoughts.
Mandy R.

2:50 PM  
Anonymous Anonymous said...

i am so sorry to hear this, my prayers are with you at this time of need.i hope all will be better the next time i read about him....angel

5:28 PM  

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