Late Night Lincoln

Linc has actually stopped the over-active tongue thing I talked about in his 10 month post.  I thought I had a good video if him doing it, but I was wrong, so I won't be able to really show it off.  :( It was too cute!

This video is from the beginning of March is a great video of Lincoln being very energetic for it being about 10pm!  He couldn't sleep one night so we got out the camera to have some fun!  (You can hear Dan having a lot of fun in the video, too!)  A lot of you haven't been able to see Lincoln this excited, so here's a treat.

Fetal Care Center Patient Stories

Lincoln was added to the patient stories for Fetal Care Center of St. Louis, where we received prenatal care!  Check it out!

http://www.fetalcare.org/patient-stories

Who's My Big Man?

Oh, my.  Lincoln is ten months old!  He is turning into such a little boy, and less of a baby.

Here are a few things Lincoln started to do this month:

*turning pages of a book
*drinking from a sippy cup
*enjoying more soft table foods - see below
*saying repetitive consonant sounds - favs are mamama, lalala, gagaga, bababa, with an over-active tongue (I'll post a video to show you soon.  it's soo cute!)
*using the pincer grasp to pick up small objects/food
*waving - mostly for self-stimulation still, not meaning "bye-bye"
*bouncing/jumping
*and CRAWLING - still not far, maybe a few feet, but he is able to move to get what he wants!

As I mentioned in the last post, Lincoln has not grown much this past month. Lincoln's measurements as of 3/23 at the pediatrician are:

15 lbs 13 oz (<3% and 2oz < mo 9)

26.75 inches long (5% and = mo 9)

46.2 cm HC (70% and 0.4 > mo 9)

Yep, that makes Linc a lollipop.  But a darn cute one, right?

That brings us to feeding.  Lincoln's feeding issues continue, but are better than they were.  The most troublesome, and relieving, part of Lincoln's bottle feeds is his behavior.  He still drinks the best when super sleepy, but he now will take a small bottle while awake.  He is not gagging and seems to be more interested in drinking.  I also started to transition Lincoln to Pediasure this month.  This helps to get some extra calories in since Pediasure is 30kcal per oz, compared to Enfacare 24kcal.  And Linc seems to like the vanilla flavor.  So far, Lincoln is getting about 4 oz of Pediasure.  We have been battling some constipation issues since going up on the volume of Pediasure, but have managed to get by with adding more prunes and peaches to Linc's diet.

I stopped the night feedings the doctor requested about two weeks ago.  Lincoln was starting to just compensating for the late feed by taking less through the day.  Plus, with his teething, I wanted to let him sleep if he was able to.  Once he is awakened and realizes his gums ache, he doesn't easily go back to sleep.  So I thought I was not doing him any favors with the night feed.  Since I have stopped, Lincoln's volumes have slowly increased. His daily intake is usually around 18 oz.  Still much less than the desired 27-30oz, but it is better than 13.  Discontinuing the night feed may be the reason Lincoln didn't grow this past month, but it was best for our situation.

As far as solids go, Lincoln is enjoying some table foods.  He absolutely loves to feed himself, so anything I can offer him as finger food is usually a hit.  He will still eat some purees, especially if I dip a cracker and feed him that way, instead of using a spoon.  Don't ask me why.  I guess it is more fun.  Some of his favorites are: chopped pear, banana, kiwi, and cheese.  Purees he likes are: egg yolk with formula, Beechnut brand "country breakfast" (pancakes, eggs and bacon), applesauce, peaches, and whole milk yogurt.

Lincoln is still sleeping through the night, usually just needing an occasional pat and binky replaced a few times. (Loving it!)  At ten months, he has his two middle bottom teeth and two top lateral incisors (the ones next to the front ones).  He is working on the two front top teeth and they are already broken through the gum.  Poor guy.  It just never ends.  Generally, Lincoln does great with teething.  He has a little trouble sleeping and doesn't drink his bottles as well, but he doesn't cry excessively or need a lot of cuddling.  But we already knew he was a strong guy.

Lincoln's wheeze has improved a little with the help of his inhaled steroid over the past month.  He still needs two treatments of albuterol per day, but he is more comfortable.  It seems like the steroid has helped the albuterol to work better.  If that makes sense.  He is back on continuous oxygen at 0.1 LPM for a few days after I saw him struggling to drink his bottles.  I will try him on room air during the day again later this week.  Hopefully he is ready.  He's been doing great back on 0.1.

Oh, and I also trimmed the hair by Linc's ears this month.  The hair was getting so long it was curling and beginning to get stuck in his tape.  So, Lincoln had his first hair cut!

Here are a few pictures from the other night that I think showcase how happy and active Linc is these days! What a heartbreaker!

Can you see Linc's fangs? Ha.

Lincoln has to stand on everything!

Happy Birthday, Linc!  Mommy loves you!

More Os, Please

Lincoln has been doing fine without oxygen the past two and a half days, except when he is drinking a bottle. He has been showing me he is too tired to drink and always passes out during a bottle feeding. He was satting 96 and above mostly during the day, but falling to 90 while eating. So, it's back to continuous Os on 0.1 liters for a week to give Lincoln some more time. It was so nice to have a glimpse of the future. I know Linc will be off soon. We cannot push him. Whatever he needs is what he gets!

This morning we went to the pediatrician for Lincoln's last synagis shot for the season (RSV antibodies)! Yay! Lincoln enjoyed the visit, until the shot that is. He was flurting it up with the nurses! The Doc was very pleased to see Lincoln on RA (room air) and breathing so comfortably.  (Little did she know that later in the day he would be back on...He's almost there.)  She was only concerned about his lack of growth over the past 3 months. She is aware that CDH kids have a hard time in that department, so she didn't offer any advise. Lincoln was actually down 2 oz from last month's visit, no growth for length and 0.4 increase HC.  She is leaving his diet up to his therapists and SLCH docs.

We won't be back to the peds office for two months! That will be Linc's 12 month check up!  Crazy how time flies!  We have been going to the ped every month since Lincoln came home, so a month off is wonderful.  One more indication that Lincoln is doing well overall.

"No Lines, Babe. No Lines."

Lincoln has been doing well on 0.1 Liters for over a week now, so the next step is to get him just on 0.1 at night for a few weeks.  The other night, I decided to try taking Lincoln off for the first time during his bath.  He looked great.  His breathing remained calm.  Although, afterwards, I plugged him into the pulse-ox and his sats were 92/93.  His doc says that we are coming to the point where we need to focus on Lincoln and how he is with work of breathing and activity level.  His numbers can be lower as long as he is telling us he feels ok.

So, this afternoon I planned to try Linc off again after his morning nap.  We went to the changing table like usual to change Linc's diaper and then I casually removed his oxygen line.  Not until I was talking to Linc about having to change his shirt after we had lunch (and having to put his line through the neck first), did it really hit me.  No Lines.  There are no lines attached to my baby to mess with.  I can easily change your clothes!  We can go where ever we want!  And I scooped Linc up and headed straight for the front door.  I didn't stop until I was at the edge of the lawn looking into the street, holding my free baby.  "No lines, Babe.  No lines!"  That was all I could get out before the tears started to flow.  Then I told Lincoln that I loved him and that he was such a strong little boy.  I told him how proud I am of him and I just stood there, hugging my son in the warm breeze.  Freedom.

This may sound a bit dramatic to you all and I know the neighbor across the street thought I was nuts.  But image never having the ability to pick up your child and walk anywhere without planning ahead for the tether that attaches him to your house.  The 25 foot oxygen line that restricts you to only going out to your front step, and not even reaching to the back door.  Always thinking of that line.  Making sure you aren't going to trip on it as you carry your child around the house.  Making sure it isn't pinched as you put him in the highchair, or worse yet, doesn't strangle him as he spins in his exersaucer.  In almost ten months, I have never been able to just WALK OUTSIDE with Lincoln.  It was such an amazing feeling to hold my baby, breathing air on his own, with no lines attached to him.  No sensors.  Just the two of us.  Free to go where we pleased.

What a milestone for Lincoln.  What a milestone for me.

First Video Post!! Linc is on the MOVE!

Lincoln has been very close to crawling for a few days now.  Today he was able to move forward about one foot!  It really wasn't far and he is not really crawling all over yet, but it was so exciting to see him actually MOVE!  I thought this would be a perfect first video post!  Enjoy!   (EDIT: I made the video public, so everyone should be able to see it now!  Sorry.  It is my first video and I am still learning!  Thanks for the heads up, Lisa!)

Neela the Cat

As you may or may not know, we are animal lovers in this house.  Lincoln included.  We have two dogs, Peanut and Bailey, who are staying with Dan's Grandma (G-G) while Lincoln is on oxygen.  I miss them a lot, but it is just easier to have them out of the house.  I can just imagine poor Lincoln being dragged down as Bailey, our hyper German Shepard mix, gets tangled in the tubing!  She is so sweet to look after our boys (and I know they are loving Grandmas!)

We also have a two year old cat, named Neela, who began living in our basement after she started to chew on Linc's oxygen tubing about six months ago.  She still comes up for visits when she can be supervised.  Lately, Lincoln has just been tickled pink with her!  He will look at the door to the basement and get excited, waving his arms, as if calling her up to see him.  It's so cute!  I was able to capture the first time Neela actually came up to Lincoln the other day (usually I just put him down next to her and she runs!).  He had a great time with his kitty!   (As I know he will with his puppies, too, someday soon!)

Calling to Neela as she thinks about coming over.
(Yes, there is a baby gate AND a door to the basement.
The gate is to keep our distructive cat from clawing the wood door.)

Neela is checking Linc out.

She's had enough, but Lincoln says, "Come back Neela!"

And she did!  Linc got a handful, which Neela didn't like too much by the way.

The evidence.

Lincoln LOVES his kitty, Neela!

Second Time's A Charm

I'm excited to say that Lincoln has been on 0.1 liters for a little over 24 hours! It won't be long now...

Back to 0.2

After a long day of Lincoln being very clingy/crabby, and drinking even worse than normal these days, Lincoln's saturation were hanging out at 95 when I finally got him to sleep tonight at 9pm! (wayyyy too late)  Based on these observations, I turned Linc's oxygen back up to 0.2 LPM.  He is sleeping soundly after a small bottle and satting 97.  I'll try again in a few days.

0.1 LPM - Almost There

Lincoln is looking good on an oxygen flow of 0.1 LPM today!  Hopefully he remains comfortable as he gets used to this flow over the next few days.  I'm amazed by his progress, with breathing and activity!

Lincoln is still not showing improvement with eating, but he is getting by.  On a good note, the Pulmicort seems to be starting to work, and I have seen improvement in Lincoln's wheeze these past few days.  Linc's Dietitian came for a home visit today.  Here are his measurements on her scale:
weight 16lbs (Yay! I know every scale is different, but I've been waiting to see this number again since Dec)
length 26"
HC  46cm

She is always interested in length for weight ratio, which shows proportion.  Similar to BMI for adults) His length for weight is between 25-50%, closer to 50%.  So he is pretty proportioned regardless of his actual weight.  She suggested restarting Linc's reflux med and working with OT to push using a cup since Lincoln seems uninterested in bottles.  So, I will be trying some of these over the next few weeks to see if Lincoln will eat a little more.

Babies Will Be Babies

After giving Lincoln some time to adjust to his new meds, get past some major teething, and get into the upswing from a mild cold, he is still not eating a ton.  He is, however, pretty much maintaining his weight.  He gains a little one week and loses it the next.  He is still just under 16 lbs.  He is much easier to feed while sleeping or just before drifting off to sleep, and only takes about 2 oz if I feed him awake.  He still seems uninterested.

His neonatologist reassures me that his behavior is normal for his age and/or for a baby with a cold.  While she would like to see him taking more like 720ml per day (Linc is struggling to get in 600), his intake is enough for him to be active and happy.  She is encouraged to hear that Lincoln has been so active and happy during his cold, and has actually been able to gain new milestones with his tummy time.

We will continue to watch Lincoln, but overall she is not too concerned about his feedings.  We may transition Lincoln early to Pediasure to help him gain weight if he continues to just be level.  Pediasure is 30kcal per oz and flavored, compared to his formula that is 24kcal and tastes like, well, formula.  I'll be in touch with SLCH over the next weeks to monitor Lincoln's calories, as well as his flow of oxygen. He is still on 0.2 now.

Also, Lincoln's urologist had to reschedule his first surgery. The date is now May 16th.  So, I will update the post about his surgery date.