Teeny Tiny Truman

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

Sunday, August 20, 2006

Weekend Update: Sunday, August 20th

We just got back from the hospital and we're bringing Truman's second weekend to a conclusion. While the weekend wan't one of great progress, neither was it marked by any serious regression.

Truman now weighs only 1 lb, 3.5 oz, which is just under his birth weight of 1 lb, 4 oz. We've been told by both the doctors and nurses that Truman's weight will continue to fluctuate slightly around his original birth weight until he is able to start eating breast milk regularly. As you may know, Truman had his first feedings of breast milk last week, but those had to be discontinued Friday morning because his system wasn't quite ready to start processing that kind of food constantly. After all, our stomachs aren't really supposed to be used until we're born at 9 months, so because he came early we're having to train his tummy to accept and process food. They call this "Priming the gut." We've been told to expect numerous starts and stops of the feedings before he is able to eat all the time. In the meantime, Truman is still being sustained through the nutrient drip line running into his belly button.

Speaking of his belly button, the arterial line which monitors blood pressure and and the other line which is used to introduce fluids and nutrients have both started to have some problems. Because of this, it has been difficult to get accurate blood pressure readings for the last two days. They have little, tiny blood pressure cuffs which can be used, but from what we saw, they were extremely inaccurate on a child of Truman's size. To correct this issue, the nurse practitioner put a new arterial line into his left arm this evening. They gave him a little sedation and morphine for the pain, but when they stuck his arm, he turned purple and rigid, and his mouth froze in a grimace of pain. If his vocal cords had not been immobilized from the breathing and feeding tubes running down his throat, he'd definitely have been letting the entire floor know how he felt about the procedure. After they got the new line in place, a small splint was built over his left arm from the elbow to the first knuckle of his fingers to make sure that he could not interfere with its proper operation. Finally, once the splint was in place, the nurse slowly removed the old, malfunctioning arterial line from his belly button. The fluids/nutrients line to his belly button is still working for now, but it will probably have to be removed in the next couple of days because his belly button stump is going to come out soon, and they will probably move the line to one of his legs at that time.

The entire process of removing and replacing his arterial line probably took about 12 to 15 minutes, but Truman was only upset with about the first 7 or 8 minutes of that. After the process was complete we were able to talk to him softly and place our hands on him to calm him down, and he fell asleep for a little while shortly thereafter.

Each of the last two nights have been marked by us being able to visit Truman without the lid on his isolette for an extended period of time. This really allows us to feel more connected to him as we are not separated by plexiglass and allows him to hear our voices more easily. The reason that it's possible for us to do this now is because he is regulating his temperature so well that he doesn't need as much assistance from the heater in the isolette. We've also been invited to do a little more in his day-to-day routine, such as helping to change his bed linens. Tonight Kara got her first chance to pick Truman up while the nurse and I changed out the linens in his isolette. She did this by sliding her hands beneath his little bed and lifting the entire thing, so it's not the same kind of holding that you normally think of a mother doing with her child. However, it was still nice for her to get an idea of how much he weighs. We placed Truman's name-embroidered blue baby blanket from his Aunt Amy among his linens tonight, now that we can start bringing a few of the receiving blankets that we have for him to the NICU. It's really quite cute.

Something else we've enjoyed over the last two nights is not having to hunch over to speak through the arm holes in the isolette in order to let Truman hear our voices. Since speaking to him is a lot less work now, we've been reading to him for more than an hour each night. Last night it was Dr. Suess readers, fairy tales and some sung mother goose rhymes, and tonight it was a few chapters from The Lion, the Witch, and the Wardrobe. Truman seems to respond well to our voices, either by becoming active and interested, or by calming down to the point of falling asleep. The sung nursery rhymes really seem to put him to sleep well at this point.

Truman remains on the high-speed oscillating ventilator at this point, but the nurses have been gradually turning down the pressure that the machine uses to push in the air. This is a good thing because the lower the pressure, the more gentle the machine is and the less risk of damage to his lung tissue (some of which will probably happen regardless). Despite the fact that his blood pressure readings and blood oxygenation monitor have been bouncing around erratically for half the weekend, Truman's blood gases continue to look good. We expect that some of the erratic behavior of his blood pressure will now be corrected with the replacement of his arterial line. Truman also remains under the bili light treatment. He doesn't like the constant spotlight, but it is still needed to help him break down a compound resulting from his jaundice because his liver can't yet do the job by itself. However, his skin is showing good progress and is beginning to look a lot better. The Aquaphor ointment treatment that he has been receiving over most of the last couple of weeks has been discontinued, and they'll be moving to a simple vitamin-E cream before long. He's not eating breast milk at the moment, but we hope to see him give it another try in the next couple of days.

Overall, Truman is remaining fairly steady right now. There's still a long way to go, but given enough time I'm confident he'll make good progress. For now, we're playing a waiting game until he is ready to start working on the next big hurdles is his future: eating and processing food regularly and lung development.

As always, thank you everyone for your encouragement, prayers, and support. We'll keep you all posted.

--Ben

18 Comments:

Anonymous Anonymous said...

We think of all three of you many times a day and take that as an opportunity to pray for you. Must say it's a joy to see what mature parents you suddenly became. I wonder...how old will Truman and Jason and Cinda's son have to be before I can start fattening them up on my Macaroni and Cheese? Sure worked for their dads!!!!

Much love to you all,

Sue and Eddie Hammons

12:36 AM  
Anonymous Stephanie said...

I hope that things continue to go well and I will continue praying for your little miracle!! God Bless you and I am sure he will be progressing soon enough!! I will continue to keep updated, I can't wait for the post when you can finally take him home!! That will be "THE MOMENT"!! God bless and take care!

until next time, my best wishes for you and your "little" family!

12:46 AM  
Anonymous Anonymous said...

Truman and Family, I was linked through to your blog through iVillage, and i just wanted to let you know that I am thinking of you every day, checking your blog, and sending positive energy your way. You are all doing a great job being strong! Hang in there!
Love,
The Schutte Family
Den Haag, The Netherlands

12:56 AM  
Anonymous Anonymous said...

Hey there guys. I was also linked to you from ivillage. Please know we are sending many thoughts and esp. prayers your way.
Keep up the good work! I'm sure he is loving the readings!

Blessings,
Horton Family
Georgia

1:06 PM  
Anonymous Anonymous said...

Kara, the book club girls missed you last night and I wanted to let you know that we are all thinking of you and your family. I am happy to hear that Truman is doing so well and the photos are wonderful! Best wishes to you all...

Valerie Qualls

3:07 PM  
Blogger Maggie said...

I remember the first 'holding' of my 24 weeker by lifting her up while the nurse changed her sheets. It was awesome!!! You will get that full holding experience in time but wasn't it wild how tiny he is?? I remember thinking that after our interaction.

Sending lots of prayers to all of you!

4:25 PM  
Anonymous Anonymous said...

Hey Ben, just heard the news. I am happy to see that he is stable and making some progress. My 2nd son spent the 1st 6 weeks of his life in a NIC unit so I understand some of the things that you are going through. The best time is when you are able to take them home! My thoughts will be with you all and I will continue to log on for updates.

Kris Folkins

5:49 PM  
Anonymous Anonymous said...

I honestly sit on the edge of my seat waiting for these updates, and I don't even know you guys! I, too, was linked to your site from ivillage and have been a faithful reader ever since. I always breathe a sigh of relief when I read that he is still doing well and making some progress, knowing that my prayers for Truman and your family have continued to be answered. Please know you are in my thoughts.

6:16 PM  
Anonymous Anonymous said...

You may be interested in this web site (they sell Micro-Preemie clothes). http://www.preemie.com/Early-Baby-Micro-Preemie-Romper_p_20-187.html

7:09 PM  
Anonymous Casey DiBenedetto said...

zSo glad to hear all the good news and see the pictures! You are all in my prayers daily!

Love,
Casey

9:24 PM  
Blogger Leslie W. said...

HI Kara, Ben & TRUMAN...
Cousin Leslie & Eric are thinking of you all...
I'm happy to hear that Truman is doing so well!
We'll all keep praying
Leslie~Eric
CJ~Monika~Hannah

10:22 PM  
Anonymous Lori Johnson, Shelley Id said...

Wow, what a roller coaster ride you have been on. I thought my baby was small at 4 lbs 4 oz. Truman is in my thoughts and prayers. I hope he continues to do well, and maybe you can have him home by Christmas? Hugs
(I was linked to you from a Friends of Allie cancer awareness board.)

8:52 AM  
Blogger Dupree said...

I got to your site from ivillage. Been thinking of you and praying for your family. If it helps, I know a (now) 18 year old beautiful, little girl who was born at 1lb 9oz. She has no lasting problems, but the first few years were tough. I used to babysit her. Hang in there and know that there are many people supporting you.
Allison

8:59 AM  
Blogger JP said...

We were up at Baylor today getting x-rays on Halle's arm and I thought about Truman over in the other tower. I will continue to pray that he grows stronger every day!

9:58 PM  
Anonymous Anonymous said...

I am also linked to your blog through iVillage. We are keeping you in our thoughts and prayers. Although, I don't know you and your family, I have saved your site so that I can keep up with Truman's progress. Stay strong.
The Collum Family
McDonough, GA

6:23 AM  
Anonymous Lizz said...

MY PRAYERS ARE WITH YOU.

(I found your blog in one of my groups, your friend posted it there. http://www.care2.com/c2c/groups/disc.html?gpp=94&pst=543916 )

8:56 AM  
Anonymous Anonymous said...

It is such an emotional up and down ride! I work in the Tiny Tots Clinic at Baylor and was given your site by another parent who brings her baby here! I have been following your story and praying for you guys! The little milestones mean alot and it will get better! Teeny Tiny Truman is truly a miracle!

Michele
Baylor Tiny Tots Clinic

12:36 PM  
Anonymous Anonymous said...

It's amazing to see how you are strong and how you have faith.Don't loose that.Truman is a real miracle and he is a real hero.I have never seen someone so strong and eager to live.
stay strong and positive.you will be in my prayers.

8:34 AM  

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