Madelynn Amber Is A Year-Old

Our little miracle is a year old!

  Madelynn's Early Intervention therapist came over on her birthday to evaluate, and test her various "skills" to see were she was measuring at. She is right on track for her adjusted age.  She is measuring eight months on everything, but sitting.  She is measuring at six months there.  Madelynn can sit if she leans forward on rests on her hands, but she is still unable to get into a sitting position on her own, and when placed, unable to stay there longer than 20-seconds.  This is an improvement from last month.  She couldn't even do those things.  Becca thinks by our October appointment, Madelynn will be sitting.

  We went to her 12-month Well Baby Check-Up on Friday.  Dr. Zarbock came in and said " Did you ever think we'd get here?"  That just set off the water works.  (I'm a big baby when it comes to my baby).  No was the honest answer, yes was the logical one.
  He said he couldn't believe how well she is doing.  She gained 5 pounds since her 6-month check up.  She weighs 13.1 pounds, and is 27 inches long.  She is on the height chart for the "normal" 12 month-old in her height being in the 4th percentile.  She is doing her own curve for her weight.  The doctor has no doubt she will eventually meet up with the chart lines.
  She got her MMR, and chicken pox shot today.  She was so brave.  She cried for a second, then was over it.  She's been through much more than a random needle poke.  Such a toughie.

At a year Madelynn can:
*Roll
*Scoot (Only if she really wants something).
*Recognize, and get excited about Mom and Dad
*Mimic Mom
*Coos (huge for us because of her vocal cord).
*Eat solids for one meal
*Eat yogurt melts
*Look for toys when they go missing.
*Use a sippy cup on occasion.

Our Journey
 Madelynn at 2 Days Old

Madelynn at 3 Months Old (On Her Due Date)

She Was Supposed to Be A Christmas Baby

Madelynn at Six-Months

Madelynn Finally Off the Oxygen

Madelynn at 9-Months

Madelynn at a year.

At one-year Madelynn does not use oxygen, or have her g-tube in.  She has learned to eat orally, and use her single vocal cord.  She continues to prove there are modern-day miracles, and such a thing as unconditional love.

6-Month Check Up

Madelynn at six months.

Maddie saw Dr. Zarbock on Friday for her well baby check up.
Developmentally she is on track for her adjusted age of three months.
Physically not so much. She is well below the 5 percentile for a three month old.
She is 8 pounds 13 ounces, and 20 1/2 inches long.

Dr. Zarbock has discontinued all her medications, which is exciting because it shows Maddie is growing well, and we don't have to get up at all hours of the night to administer her calcium. She does not have acid-reflux anymore, and handles her oral feeds really well.

Her gastronomy tube site looks really good. She does not have any granulated tissue. The site looks as though it has healed. It is almost time to change out the button. Scary!! It is a lot different changing a button on a stiraf0am baby than on your own child who likes to kick you in the face during a dressing change.

He increased her feedings from 64 mLs to 74 mLs. She drinks, on average, 35-50 mLs orally. The early intervention specialist, Becca (who is amazing!!) thinks Madelynn will be off her gastronomy tube in the next four months or so.

The doctor is a little worried about the right side of her head. He thinks if we can't get her head round by rotating her she may need a helmet. She's been on her right side so much because of her left vocal cord paralysis. If she spits up while on her left side she cannot protect her airway. We have to prop her up then put her on the left side.


At six months Madelynn likes:
*Music
*Playing patty-cake (which is really just us tapping our hands to her)
*The Frog Song
*Getting a bath
*Being Naked
* Watching the Backyardigans
*Looking out the window
*Being on the floor on her back

She dislikes:
*Having her diaper put on
*Her dressing changes
*Wearing clothes
*Being on her tummy for too long
*Sleeping on her left side

She can:
*Recognize Mom and Dad
*Recognize our voices
*Smile
* Coo and laugh (it would be audible if she had two working vocal cords)
*Bear weight on her legs for short periods of time
*Hold her head up
*Track objects
*Play with her hands
*Suck her thumb
*Roll from her back to one side

Madelynn's favorite place to sleep.

The Ride Doesn't End Just Because We're Out of the NICU

Madelynn has been making gurgling noises when she sleeps, and has had a rapid respiratory rate. We took her to the pediatrician yesterday. The doctor was concerned Madelynn may have RSV, even though she has received the vaccine. If Madelynn did not have RSV, she may have another virus. The doctor told us to head over to Primary and to not be surprised if they have to admit her again.

The emergency room doctor was concerned, and sent for tests. After four hours in the ER the RSV came back negative, but Maddie was diagnosed with URI. We have to return to the pediatrician this morning to have Madelynn looked at again.

The NICU roller coaster doesn't end just because we are not there anymore. Madelynn is a former micro-preemie who still needs extreme caution when dealing with even the most minor of aliments, and there is always the threat hanging over us that she may have to be admitted back to the hospital at any time.

Jeremy's Follow-Up

We went back to St. Mark today for his orthopedic follow-up with Dr. Martin.
His finger still looks horrendous; very bloody, and very swollen. The sutures were taken out, and the x-ray showed the finger healing properly.
Dr. Martin would not release Jeremy for work. Jeremy's flesh wound has not healed, and until it shows improvement he cannot return to Intsel. Not the best news.
Jeremy has another appointment scheduled for March 8th. We are really hoping for a work release at this time.

Day 3

I keep trying to figure out how I am going to write blogs now that she is home. There aren't any real updates anymore. Mostly it's just me wanting to post the cutest pictures of the day. I haven't decided if I want to do this by a slide or not, but if I post an individual blog then there are going to be a ton.

I forgot to talk about her wellness check with Dr. Zarbock yesterday. He was encouraged to hear she smiles, and does most things a "normal" 2-month old would do. (We will be going by adjusted age for the next couple of years when it comes to developmental mile stones). She weighed in at 8 pounds 3 ounces. She is in the 5th percentile. He thinks the right side of her head is kind of flat, but I told him will grow her hair out, no biggie. We will return for her 6-month immunizations next month on the 26th.

Cute pictures of the day:

She was holding her rattle!

She didn't nap for long much to my disappointment.

Onsie shout out to Grandma Jones.

She seems to really like her Play Place.

Another Day, Another Hurst In The Hospital...

This time it was Jeremy. While at work moving items with a crane, a piece of angle iron (around 300 pounds) dropped onto his left hand. His index finger took the brunt of everything. He was taken to a clinic which works with his company on Workers Comp. They took one look at it and sent him to St. Marks around 10 AM.

I arrived about ten minutes behind him. When I got there he was rocking back in forth in pain. We were taken back to the ER, and they examined the finger.







It took forever for them to order pain medication for him. They numbed it with lydacane first. When that didn't help, they ordered the morphine. The x-rays came back, and showed his finger to be broken in half. Surgery was necessary. They put his finger in a metal brace while we waited for the orthopedic surgeon to arrive.

He was sent to a room, and was taken into surgery around 3:30 PM.


He was out of surgery around 5 or so. He was brought back to his room around 6. The doctor came and told me Jeremy cannot return to work until after his check-up next Thursday. He had pins placed into his finger, and placed a plate.



The finished product:


We are so thankful he didn't lose his finger. This accident could have been a lot worse.