Teeny Tiny Truman

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

Thursday, September 07, 2006

Progress Update: Thursday, September 6

Truman has had a couple of very good days. His fiestiness is back as strong as ever -- so much so that the nurses asked for orders for a higher dosage of Ativan, a drug which is designed to help calm him down. When I was changing his diaper at noon on Wednesday, he was so agitated about it that he pulled out his feeding tube and pulled the guaze off his stoma (the wound where his intestines come to the surface from surgery). I tried to pry his little fingers from the tube before he got it all the way out, but he's a strong little fellow. I couldn't get them loose.

We received results from the follow-up head ultrasound. There appears to be some improvement! The right ventricle has not increased in swelling, and the blood in the left ventricle appears to be resolving some. The biggest news is that because the bleed in the left is slowly resolving, they think it was not an infarction as they reported last week. An infarction is like a stroke. It means that blood was cut off to a portion of the body, causing the tissue to die. If he did have an infarction in his brain, that would mean that portion of brain tissue had died and was permanently damaged. Since they now believe it was only a hemorrhage rather than an infarction, his brain is still damaged, but he could recover from the damage or create new pathways around it as the blood re-absorbs.

He is down to a very low dosage of both the blood pressure medication and the pain drip from surgery. They plan to wean the pain medication entirely today and hope to do so with the blood pressure medication, but they are not too hopeful about getting off of the blood pressure medication just yet because his blood pressure keeps staying pretty low. They made give him a cortizone shot to speed the blood pressure improvement up.

He is doing really well with the new ventilator. They say he may attempt to come off of it completely and move to C-PAP (a machine that delivers pressure to the lungs rather than breathing for him) in two or three weeks. He will likely fail the first time off the ventilator and have to go back on, but the fact that they are thinking two to three weeks is a positive sign.

The ostomy bag was put on last night, mostly to keep his hands out of the stoma (the fiestiness again). He will likely start feeds in the next couple of days. He needs to be off the pain medication, and preferably the blood pressure medication, first.

The nurses said that kangaroo care could start any day now. That means we'll get to start holding our little guy soon. Other than me lifting him up on the bed linens to change the bottom linens and Ben lifting him up once to weigh him, we haven't held him yet. Kangaroo care means that we would sit in a comfy chair with our shirts off or open. Truman would be placed on our chests, skin to skin. By placing directly on our skin, our skin helps to maintain his body temperature without him using so many calories to do so. Because his ear will be placed against our chests, he will be able to use our heartbeats and respiration to help regulate his own. Of course, he will still be on the ventilator. Kangaroo care has also been shown to help babies grow faster. The benefits for us are pretty obvious. We are both really excited about it!

Nurse Callie talked to us last night more about his stay overall. She said that because his lungs have done so well and because his ventilator support has been low pretty much all along, he probably won't be in acute care section of NICU as long as other tiny babies. But, because his intestional issue means he only has 2/3 of his small intestine to absorb nutrients, he's probably going to have a longer stay in the "feeder grower" section of NICU than other babies. They are talking about trying some creative options to use a catheter to re-insert the contents of his ostomy bag into the other opening on his stoma so that he can try to continue absorbing the nutrients in the lower third of his small intestine and keep his large intestine running. If they can get that to work, he will able to grow better than if his bag were just emptied.

He's getting fatter everyday. He's up to 1 pound, 11 ounces.

As always, thanks for all of the support and prayers,
Kara

23 Comments:

Anonymous Anonymous said...

I am so glad that your Truman is doing well. I pray for Truman and you everyday and am so pleased to read the progress on the blog. I have a baby that is due Dec 10. so babies are often on my mind. Keep strong. Joy

10:38 AM  
Anonymous Anonymous said...

That all sounds like good news. Glad to hear your little guy is such a fighter. Know that so many are thinking about you guys. I'm hoping for you that you have all the support and care that you and Ben need to get you through this difficult time.

Jane, an iVillage Dec 06'er

10:56 AM  
Anonymous Stephanie & Jeff said...

Great News! I hope he continues to do well and he is in our thoughts as always!

Steph & Jeff Mackey
Washington State

11:16 AM  
Anonymous Anonymous said...

how exciting you'll get to hold your baby soon skin to skin! Thats so amazing. I'm so impressed with everything Truman is going through and how well he is doing.

I'm a March 2006 mommy and just stumbled on your webpage,but I'm checking back daily for pictures and updates. THATS fantastic news too about his brain. I'm so glad to hear that it wasn't a stroke and he'll be able to grow new tissues there!

Go Truman!!!!

11:32 AM  
Anonymous Truman's Aunt Amy said...

I'm glad to hear such a good report. The brain scan sounds positive as does talk of feeding and weaning him off the ventilator, but I'm really excited that you'll get to hold him soon! That's just fantastic. I love the new pictures. He's a beautiful baby.

11:37 AM  
Anonymous Anonymous said...

Kara and Ben,

I am so excited to hear that you are soon going to be able to hold Truman. Your update had so much good news in it.

Donna Williams

11:41 AM  
Anonymous Anonymous said...

Awesome! What a positive post! So nice to hear that he is progressing. You all are still in my thoughts and prayers. Take care!

-Katie

11:42 AM  
Anonymous Chris & Jeri said...

All answered prayers, God is good and in control, as always praying for you all often, don't forget to love on each other, it is easy to do with all the concentration on Truman,

11:48 AM  
Anonymous Charlisa said...

Wonderful news!!! Can't wait to see pictures of you holding your baby boy!

11:57 AM  
Anonymous Maggie said...

Hooray for Truman! I'm glad he is doing better. Fiesty is a great trait for a preemie - he's a fighter! Take it from me - my 24 weeker is STILL a fighter and she's 18 months old.

Kangaroo care is awesome! Do it as much as they will let you. Both my husband and I really enjoyed it. It's a great way to bond with Truman.
Maggie (maggie_z IV Preemie)

12:59 PM  
Anonymous Anonymous said...

I'm praying for little Truman. May God bless him and keep him safe. I pray he gets strong and well. He'll come home to you soon ((hugs))

--Helen.

1:44 PM  
Anonymous Rebecca said...

I found about your little guy from IV, and have been reading his updates regularly.
I am SOOO happy to hear he is improving, he is a little champion and absolutely adorable.
I have told all my friends about him and they read up on him too.

Keep strong little guy!!! :)

2:32 PM  
Anonymous Anonymous said...

You've got a strong little boy!! His progress brings tears to my eyes. How wonderful for y'all.

Pearl, an iVillage Jul 06 member

2:45 PM  
Anonymous Anonymous said...

I'm so glad to hear that Truman is doing better. His grandmother is my eighth grade honors science teacher and has been keeping me updated. Just hang in there and know that my thoughts and prayers are with you.

Kayla Townsend
P.S. WE LOVE YOU TRUMAN!!!

4:37 PM  
Anonymous Sadie said...

What great news! I was out of town when you posted must of your news about the intestinal surgery and brain bleed. It broke my heart to read your sad news. I am so glad it is not as bad as they first thought. I bet Truman will flourish once he gets some physical contact with you both. How wonderful it will be to hold him! I can't imagine how hard it must be not to just scoop him up in your arms. You are in my thoughts daily.

5:08 PM  
Anonymous Anonymous said...

Kara & Ben,
I actually heard about your blog from a friend in Canada - Truman has fans all over the globe! I happen to live in the Dallas area, and my daughter is a temporary resident of a NICU in Carrollton. She was born 10 weeks early on August 6th after my long struggle with pre-eclampsia. My sister had PE too and her son was born weighing 1.5 lbs. He is a year old now and, though small, developing normally! My daughter was 2 lbs 7 oz but is now up to 4+ lbs. She'll have a longer than average stay in the NICU as she has Down Syndrome which causes some delayes in development at this stage. We'll be thinking of you and Truman. It's kind of like a roller-coaster ride, isn't it? Hang on tight!!
Leigh

7:42 PM  
Anonymous Anonymous said...

I was about to go to bed and decided I would check quickly to see whether there was any new news for Truman today and I am so glad I did - what a great post! So much good news, but most exciting about Kangaroo Care - all three of you are going to love that! Cuddle, cuddle, cuddle!!

Kristen Dec '06 EC

8:20 PM  
Anonymous Anonymous said...

I'm doing my daily check-in on Truman:) I hope this is one of many of the wonderful days to come.
I'll keep the prayers going;)

Dec 06 Ivillage mom

9:11 PM  
Anonymous Cassi Hill said...

i am so glad to see that he is well i hope he gets better soon. if you don't kniw me i am mrs. altenbaumers students and one of the 8th grade cheerleaders i am always prying for truman and i tell everybody else also we really hope he gets better love always

Cassi Hill

10:25 PM  
Anonymous Lori Johnson said...

I continue to keep you and Truman in my prayers. Just reading about the colostomy brings back so many memories. What a happy moment for you when you get to cuddle with you little guy.

11:00 PM  
Anonymous tiffani said...

Truman has his spunk back, woohoo! I just knew he would come out of all of this just fine. So happy to hear the great news!

11:28 PM  
Blogger kksme said...

i know that you dont know me but i am on that wte due in january board. i am so happy he is doing well. my god child was born that early and she survived all odds!!! so i will keep yo all in my prayers

7:57 AM  
Anonymous Anonymous said...

I'm a first time mom due 12/28 and found your blog on babycenter's message boards. You are some amazingly strong parents and it's clearly showing in Truman's determination to fight.

I will keep you in my prayers and have let my church know about your blog so they will be checking in and praying as well.

~Kim

10:29 AM  

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