"A very merry unbirthday to You!"

October 2, 2013

6 months!!!

Day 8 in the hospital

Yep, our tiny Brynn Laree is 6 months old today!! And I do mean tiny, she is 11 pounds 5 ounces at last weigh in. Besides mamas with preemies or heart conditions, that's about the size of a 2-3 month old. Not for long though, we hope she starts packing on the LB's in the coming months :) 

So, to catch you all up I'll start from day 2 (9/27)...

Brynn was doing well. She woke up a bit, but was not in the highest spirits. She was raspy from having the breathing tube out, which was strange to hear her already tiny voice even smaller. She was kicking around, crying overall seeming uncomfortable. She continued to be sedated, but fought it like crazy. Down Syndrome babies are famous for "eating" through their medication. Babies with Downs have a higher metabolism that can "burn off" the sedation drugs quicker than other kiddos. So Brynn woke up a few times not in the greatest of moods. Luckily her nurses are completely awesome and explained everything to us and took phenomenal care of our girl. They definitely are what keep hospitals running and what keeps families happy. 

So, here's a pic of Brynn with her nasal canula hat holding her breathing tubes (also a little pink zebra gift from Auntie Em :)

 ....Brynn's gifts from Aunts Margaret and Emily, Uncle Aaron and cousins Jaksen and Jett 

 ...And her dolly from Gramma that looks just like her, surgery scar and all

Day 3 (9/27) she was awake on and off, even took some pedialyte from a bottle :) I was so happy to have regular mommy duties again!

  

Here are some pics of her bandages, lines in and out and machines she was hooked up to. 

 

The right leg has her arterial line (to draw blood) and left leg has her central line (to give meds). They were put in while she was under, but UCK! I hated seeing those in her legs!

Locked IV in her hands that were used after central line was out.

  The blue/red line is her chest tube. That drained blood/other stuff from her chest after the surgery. That was a huge reason we were unable to pick her up :(

 

Day 4 (9/28) was awesome. She was off all meds except Tylenol with codine every few hours and Versaid (sp?) for mild sedation when needed. She was awake and happy and acting a lot like Brynn. She was really puffy from her IV fluids, which was cool to see "chubby" Brynn! But, nice when it wore off and she looked like herself again. 

Day 5 (9/29) was not as good as expected. Her temperature continued to raise, which warranted a blood test for viruses/infections. All negative...PHEW! But she still needed antibiotics/motrin to reduce the fever. Brynn was also having issues (which she had before) with throwing up. Because we were in a hospital, this was not taken lightly. She was taken off bottle feedings and put on only NG tube feeds :( Although Brynn didn't take much by mouth prior to surgery, it was something. Enough to sooth her and keep her mouth and throat from getting dry. By this point, she was awake most of the day and truly needed moisture in her mouth. It's not good when a mother has to beg for her baby to have tiny amounts of liquid just to keep her mouth wet. That was frustrating on top of the feeding and fever set backs. Still, Brynn was a champ.

 She had a monitor (for the percentage of oxygen in her blood) with a light on her toe. The nurses called it her 'Rudolph Toe' :)

 Day 6 (9/30) was great because her chest tube, arterial line, and central line came out!! But so so sad because Gramma went back to Illinois :( The best part of the day was holding our baby girl again!   

 

 

*******************************NOTE TO PARENTS****************************

Never ever take holding your kids for granted. No matter what age, size, or circumstance ((((hold them)))). You never know when it will be the last time they ask to be held. This week has taught me so much, made me think so much about what is important. Holding my baby in my arms, snuggling, kissing, staring at her big eyes....that is what makes me feel whole. She is laying there in a hospital bed, looking at me so sad wondering why I can't pick her up, hold her, make her feel better. MAN that is tough. Never take for granted being able to hold and kiss and smother your babies. Do it as often as possible. I mean it, now, go kiss them. Cherish that they are in the same house as you. Give extra kisses for me as I am missing my sweet Brynn unbelievably tonight. I would give anything to have her here now and absolutley CANNOT wait to have her home.

 LOOK at her! This was moments after holding her for the first time in 6 days. She is just pure joy wrapped in a baby girl.

Day 7 (10/1) started awful. I got a 7am phone call that Brynn had pneumothorax. Big word meaning a pocket of air in the lining of her lung. A chest tube had to be put in on her right side. booooooooooooooooooooooo. Another poke. Another tube. Another day in the PICU heart room and not in our own room. Poor baby Brynn. Of course she was remarkable and fought through it remaining happy. I have no pics from day 7.

Day 8 (today) RULED. Off of oxygen. 2nd chest tube out. Temperature back to normal, so rectal thermomater out (poor girl had that awful thing in for week). She was back to taking bottles during the day and did not throw up!!! Not to mention she is 6 months old today! 

All in all, couldn't have gone better. Her massive smiles say it all.

 She even got to wear a sleeper tonight :) Anything to make us feel as back to normal as possible!

Again, thank you for your prayers, love and support. Even though things have not gone as smooth as origianlly thought, that's life! Brynn is showing us (all) what it means to be patient and faithful. 

 Peace, love and buy your baby a mamaroo!
~Brynn Laree~

"A very merry unbirthday to You!"

-Alice in Wonderland

"I got the eye of the tiger, a fighter, dancing through the fire Cause I am a champion and you’re gonna hear me roar"

September 26, 2013

5 months 24 days

As soon as I saw Brynn last night,  an elephant just got up and walked off my chest. I didn't even know he was there until he was gone. Brynn looked great. Others may not agree, but compared to what we were preparing ourselves for, it was much better. We thought she would be red, swollen, bruised, and not looking like our Brynnie. When you have that in your mind, a few tubes is nothing. The black strip on her forehead is just sensor, but looks more severe. Her arms are in those weighted wraps because she was flailing a bit and they didn't want her to pull out any tubes. She still has her breathing tube in these pictures from last night....

 I know for some of you these pictures are difficult to see, but I promise, she is doing great! 

Today she got her breathing tube out...Yay Brynn!!!!!

 Our girl is so tough! And she has been made even stronger by all the prayers, thoughts, and love sent her way. How LOVED is she that many of you have been praying since December?? We are so thankful for all you've done for us :)

 Time for rest, another long day tomorrow....

 Peace, love and go hang at McHenry Dam!

~Brynn Laree~

 "I got the eye of the tiger, a fighter, dancing through the fire 

Cause I am a champion and you’re gonna hear me roar"

'Roar' Katy Perry

(Yeah, not a fan, but I don't care. THIS describes our Brynn to a T.)

"I'll follow you into the dark."

September 25, 2013

5 months 23 days

 

It's been over an hour.  Just over one hour ago my smiling baby girl went into open heart surgery.  I knew it would be hard, the hardest thing I've had to do but I was not prepared for how heart wrenching it would. How completely helpless and sick and empty I would feel. Watching a nurse I had met only moments before take my baby away was horribly indescribable. I had teared up a few times and had moments of tears, especially the last few days, but the way I reacted was not crying or weeping or even sobbing. It was a spontaneous overwhelming of pure uncontrollable emotion. I fell into Jonathan's arms hoping to wake up from a bad dream. I didn't even know what to do. It took me a long time to collect myself. 

 

We just got a call from the OR nurse....pre-surgery stuff (anesthesia and IV's are all in) and they are beginning the actual surgery. 

 

You all are absolute gems. How were we so blessed to have friends and family who are TRULY there for Brynn, Jonathan and I. Even facebook friends that we haven't seen in ages have been so supportive. We haven't been able to stop talking about the abundance of love and outpouring of prayers our perfect little girl has been getting. Definition of awesome. Saying thank you seems so lacking. So I'll steal Jonathan's line from our wedding

 

             "Thank you.....from the bottom of our hearts."

 

  Peace, love and gummy smiles

~Brynn Laree~

"I'll follow you into the dark."

Death Cab for Cutie

"I got all night to listen to the heart of a girl"

September 22, 2013

5 months 20 days

Many have been asking and we finally have an official surgery date....

Wednesday September 25 at 8:00am

3 days. Only 3 days until I experience the scariest day of my life. 3 days until our hearts stop beating for 4-5 hours. 3 days until everything changes. 

We know this surgery will ultimately be an answer to the prayer to fix our baby's heart. That once this is over she will be hungry, gain weight, breathe easy. But how are you not nervous? How do you not "worry"? Knowing everythig will be fine, until she is back in our arms Wednesday afternoon, I will be human, and I will feel scared.  

Friday we got a taste of what is to come. Brynn had a sedated echo-cardiogram. First, she had an EKG, which looks a lot scarier than it actually is.

This is her 3rd EKG. An EKG checks for problems with the electrical activity of your heart. They hook up these wires to little stickers on her chest and belly and read the electrical activity of her heart which comes out looking like a polygraph test:

  

Doesn't mean much to us, but it does to the doc's.

Now, we knew Brynn was being sedated for her echo (ultrasound of her heart). However, we did not know until 7:30 on Thursday night that she could not eat after midnight. BIG problem. Brynn takes most of her food overnight through her tube. Needless to say I turned into angry mama bear....and it only got worse as the day went on....

She was scheduled for a 3pm sedation, and did not go into the OR until 4:45. UGGGHHHH. She was starving and tired. As apologetic as they were, I was furious. 

Here she is in a tiny gown

They hooked her up to an IV while she was still awake (NOT ideal, but Brynn barely made a peep) because she was so dehydrated and in need of fluid.

 The IV is in her tiny foot :(  Thank goodness she has great veins.

Sucking on daddy's finger so furiously we thought she'd take his skin off. Poor girl.

We waited and hour and a half without our baby.  When they called our names we jumped up and ran to the recovery room. She was starving and raspy. She sucked down 4 ounces of Pedialyte in no time....then threw it up. However, it was so exciting to see her hungry and eating so much.

Of course she is home and doing awesome, but we were not prepared for a 7 hour day at the hospital. I know it's nothing compared to what Wednesday will be like, but we got a small taste.

On a happy note, she got to pick apples with daddy yesterday!  

 We will cherish these next few days with our happy scarless baby. Please feel free to ask any questions about Brynn or the surgery :)

 Peace, love, and blow kisses

~Brynn Laree~

"  I got all night to listen to the heart of a girl"

'Heart of a Girl' The Killers 

"You know you're gold, you don't gotta worry none"

September 20, 2013

5 1/2 months

So I guess if you start a blog you're supposed to keep it updated...oops. Anyone who knows me well is not surprised by this :) However, I am disappointed I haven't been more diligent. So here's all kinds of updates on our sweet girl!

On June 14th Brynn got a feeding tube. At the time, it was so scary. Knowing full well this was what she needed because she just was not gaining any weight, it still made my heart weep to watch my teeny baby have a tube put down her nose/throat/tummy. This pic was moments after we got home.

Then this showed up on my doorstep....

 Pump for feeding tube.

 Bags to fill with formula to be connected to pump, which is connected to her NG tube

 Various supplies (tape, stethescope, syringes, adhesive remover pads)

Formula and Duocal (supplement) 

Within 2 days I had it down! Brynn was responding well and a week later she gained 5 ounces! HUGE for her! She had barely gained 5 ounces in 10 weeks, and here she was chubbing up! Since then she has steadily gained enough to move her out of "fail to thrive" status. 

 Hooked up to her machine.

HA! This says 15 milliliters/hour and she is now up to 38 mL/hour...what a CHAMP!

I've had many questions/comments like: 

"I could never handle anything like that[feeding tube, heart defect, doctor visits]." 

My response? Yes you could. This is my tiny baby who needs me to be my best for her. This is nothing compared to what some parents go through. It's actually been relieving to know that she is getting the nutrients she needs rather than counting every milliliter going in hoping that today your baby is getting enough to gain the tiniest amount of weight. Of course this is far from ideal, but it's what she needs. If you were in this position you could handle because it is your flesh and blood, and you have to. Plus, God helps me handle it all :)

"How do you do it?"  

My response? I don't, God does. I just hope I'm seeing the bigger plan He has. Not to mention, Brynn is a fantastic baby. I don't just mean good, I mean, has slept through the night since birth, loves her car seat, sleeps through 12 hour car rides, is very independent, and can fall asleep on her own. She absolutely rocks. SO, I guess I don't know how YOU do it. How you get up all night, deal with colic or a screaming baby in a car. Brynn may have medical issues that seem scary, but she is a dream of a baby. I do it because she makes it all so easy :) [This is not a corny mommy rant, nor is it bragging. It's just who Brynn is...how God made her]

Since then she has made progress and hit normal infant milestones. Smiling has been the greatest. Watching your baby smile does something magical to you. It's like your whole life is defined in that smile. The feeling is indescribable. It's the most pure and innocent elation I have ever experienced. Thank you Brynn Laree for giving me that gift. 

 

She had a wonderful summer full of meeting aunts, uncles, cousins, and friends

How blessed is our girl to have such wonderful friends and family in her life! 

Another big change for us has been (half) moving to McHenry. It was a tough decision, but the best one for our little family at this time. After Brynn's surgery, in PA, we will become official residents of Illinois. We do not know how long it will be for, but we know everyone on my side of the family is THRILLED to have Brynn so close :)

Uncle Matty likes having Brynn around to style her hair...very "Flock of Seagulls"...Nice.

And her facial expressions are as AWESOME as ever

To sum up, Brynn is awesome. God is good. We have joy in our hearts. Stay tuned..... 

 

Peace, love, and drink your milk

~Brynn Laree~

"You know you're gold, you don't gotta worry none"

'Zebra' by BeachHouse