Miss K is 1 Year Old!

I can't believe how fast time has flown.  My teeny, tiny 5 pound 12 ounce baby girl is now a chubby 17 pound 4 ounce one year old :o(, I love to watch her grow and change but I also just want her to stay little forever.  We feel so blessed for all the prayers we have had answered and all the love and support we have had from Miss K's very beginning.

In the past year we have dealt with a lot starting with Miss K's heart condition, her 4 days in NICU after birth, her 3 weeks in PCMC after her release from NICU, seizures, herniated umbilical, monthly and every other month Cardiology appointments, constant and painful blood draws, medication 4 times daily, Thrush, Yeast Infections, Eczema, constant constipation from her medications among many other minor side effects (see also Amiodarone Side Effects), and more.  But we made it through it all!  Through everything Miss K has always been happy and smiling, nothing can get her down!  She is our light, she brings so much happiness and love into our home.

So onto her Cardiology check up today :o).  Miss K's EP Cardiologist was impressed with her today, and he is happy with her progress.  He asked me if it was OK if we stopped giving her the Amiodarone, of course I responded with a resounding "YES!" and he laughed and told me to stop giving it to her.  We are supposed to keep what is left just in case but she does not need to take it anymore.  It will take at least a month for it to run out of her system completely and could take up to 2 weeks before we will truly know if she is done with it.  He says that occasional SVT episodes while off the Amiodarone, as long as they are short and she is coming out of them mostly on her own, are a good thing.  It will teach her heart that it doesn't need the Amiodarone anymore and hopefully help it to not depend on it anymore if it needs that help.  And NO BLOOD DRAW today (see Side Effects)!!!  We were so happy to just leave the exam room and be gone instead of heading down to the dreaded lab :o).

The EP Cardiologist also talked about taking her off of the Propanolol sometime in the next 6 months O_O.  He smiled and told me he completely understood when I told him "I'm more than fine with taking her off of the Amiodarone, I know she'll do great, but the day you actually are serious about taking her off of the Propanolol I'm going to be scared to death and may try to talk you out of it."  He said the parents who's child was in SVT 30 minutes to a day tops and never deal with it again are always a lot more eager to get rid of the medications than the parents, like us, who had to go through weeks in the hospital trying to get their child to stay out of SVT for at least a few hours/days.  He told me he understood my fears of ending up right back where we started, which really isn't my fear, I know that if she isn't ready to be taken off the Propanolol we won't end up in the hospital I'll just be on the phone with him getting the OK to start giving it to her again and she'll be fine once it's back in her system.  It's the fear of her having SVT period that makes me hesitate, I really don't want her going into it at all and knowing that the Propanolol is what is keeping her out of it makes me very hesitant.  But it is exciting to hear him talk about trying to wean her in the next 6 months after having him tell us that she will not outgrow the PJRT and that she will end up taking the Propanolol until she can have the Catheter Ablation at 45-65 pounds.

We have some great parties planned to celebrate Miss K's first birthday :o).  She is going to feel quite spoiled.  Tomorrow she will officially be a year old and we will have a small cake with her grandparents from both sides and a few really great friends who adore her.  This coming weekend we will have a HUGE birthday bash to really celebrate her birthday, and her big brother's who's birthday is in a mere 2 weeks, this party will be with my whole family.  And in 2 weeks we will have another HUGE birthday bash with Daddy's family to celebrate both Miss K's first birthday and her big brother's 3rd birthday yet again :o).

Just a little look back on how far we have come with Miss K:

August 8, 2011.  Just mere minutes after birth.  Those purple little feet and hands make me so sad.

About an hour after birth once they figured out why her coloring was off, now she's nice and pink though looking sad with all that stuff on her :o(.

Almost 24 hours old, still nice and pink and doing well :o).

6 days old and day 2 at home and doing great!

7 days old, hours after being admitted to PCMC.

One of the first days in PICU at PCMC.

PICU

Home?  You mean this isn't home?  And I get to see this place called "home" tonight?!?

Day 4 home from PCMC and nearly 1 month old.

2 months old.

3 months

Always smiling at 4 months

5 months, it's amazing how most of the time blogger will turn my photos for me but then just once it doesn't and I can't fix it.

6 months

7 months, her famous cheesy toothless grin.

8 months, one of my favorite smiles :o).

Our sweet 9 month old

Quite an energetic 10 month old

11 months, nearly 12 months.  Sorry, the pics end here since August has barely begun and all my photos are on the camera and not accessible right now.

The Beginning

Birth 8-8-11:
Our story begins August 8, 2011. Our baby girl (who we'll call Miss K throughout this blog) was due to arrive via scheduled c-section on Wednesday August 10, 2011. No medical reason for c-section, just the simple fact that my first baby was delivered that way when my cervix wouldn't open and I never went into labor. Monday August 8 I went to my last routine check up, everything was great just as it had been the whole pregnancy. I arrived home a few hours later after a some quick last minute shopping before baby arrived. After a short nap with our son I woke up to my water breaking, something I didn't plan on considering I had never experienced it with my first baby. I called my doctor who suggested I head to the hospital as soon as I could. When my hubby got home from work we packed up and headed out, calling my parents on the way so they could meet us there and take our son home with them. We arrived at the hospital at 7:30pm and got all checked in, they did some tests on the fluid leaking to see if it was amniotic, the first test was positive but the second was questionable, while they were debating about the second test my water seriously broke, for sure no question, lol!
When my water broke I had a strong contraction and baby's heartbeat skyrocketed, the nurse came in to give me my IV and noticed it, it was so fast the monitor couldn't keep up with it, it was actually halfing the beats it was so fast. Neither nurse could count it out accurately, they were guessing it was over 200 beats per minute.
The next thing I knew they had the on call OB rushing in to hear the heart beat, he really didn't like it. Within seconds the Anesthesiologist was in my room and they were pumping my IV full of all the necessary stuff for surgery. They wheeled me back to the OR and placed my epidural in there. The OB started prepping me and my own OB barely walked in to help just before they started cutting.
Baby sister was born via C-section at 9:25pm. She cried for us. Then they whisked her off to the NICU. Her heartbeat was still too fast, but it had slowed down a little. While in NICU she started grunting while breathing and her heart rate wouldn't slow. They had to give her Adenosine to slow the heartbeat and then checked her lungs to find that her sacks around the lungs weren't expanding on their own. They had to hook her up to a CPAP machine (a breathing machine that gives the effect of putting your head out the window of a fast moving car, this was to give her lungs the extra boost to inflate like needed). They placed an IV to keep fluids and sugars in her and kept an eye on her.
I got to see the baby for a brief second before they rushed her off. As of right now I have not held her yet. It's been rough for me.
At 12:00am the NICU was able to take the baby off all the machines and tubes, except IV of course, and she did great. As of 6:00am she still hadn't needed to be hooked up again and was breathing on her own just fine. Her heart rate is still a concern though and they have called in a Pediatric Cardiologist to come in for a consult about long term care for her.
We are praying that it's nothing serious and that we will be able to feed her today and take her home when I am released on Friday.
Daddy is having about as hard a time as I am though he gets to go down to the NICU and see her whenever he wants to while I am bedridden and waiting on nurses to get me up and moving enough to go down there. Daddy has held her a few times and seen her quite often without tubes hanging all over her.
I'm sitting here waiting as patiently as possible to get to go down and hold her myself for the first time.
She weighed 5 pounds 12 ounces and is 19 inches long. Quite a tiny little thing for as big as we all thought she was going to be! But she doesn't look scrawny like Roo did, in fact she looks like she does have chunk potential :o). She's adorable with a head full of long, dark hair. She's a sweetie and the nurses say she doesn't cry much and handles all the poking and prodding very well for a newborn.

Diagnosis 8-11-11:

Miss K is doing much better. We talked to the cardiologist and he said what happened is she has an extra spark in her heart, kind of a tendon or something, that made it beat faster than it should. The Adenosine they gave her last night at birth to slow her heartbeat down broke that spark. It's not a permanent fix though, it's possible she could have a re-occurance and need to go to the ER for the shot again either in the near future or not until she's older. She could very possibly outgrow this by her first birthday and not have to worry about it again, they may have to put her on a daily medication for this until she's a year old but they're not sure yet. There's also a slight possibility she could have it happen again when she's in her teens. So many "if's" here, not really what we want to hear. But right now she's been given a temporary bill of good health and is doing great. I have been breast feeding her today, she's doing great, we've had 2 great feedings and the nursing staff is impressed with her. They are going to remove her IV in the next few hours because her hand is swelling up from it and instead of placing another one they think she's great to go without so that's awesome news :o). We will be given training on how to check her pulse and heartbeat at home and have been instructed to check it at least twice a day during diaper changes from here on out. They have been awesome to notify our pediatrician of these issues and saved me the trouble of having to remember everything and repeat it.

We're excited to say we most likely will be bringing her home with us when I get to leave Friday morning. Keep us in your prayers.