Update

Sister is takin the bottle...It's a MIRACLE!!! She took one of pedialyte (the yucky non flavored type too!) and 3 more breast milk bottles. The doctor actually came in and cut her off...don't want to overload her. She was actually upset when I took it away. She must be absolutely starving.
I feel like slipping the nurse some bills!

Perfect Heart

Lila Grace came out of surgery yesterday around 1 in the afternoon. Everything went really well and she now has a perfect heart! She actually was already off the ventilator by the time E and I got to see her...which was a BIG deal b/c they told us she could be on it for a couple days. The nurse said she was active and alert enough to pull at it and so they let her try to breathe on her own and she did! She continues to be on several monitors, ivs and drains but is doing super well, per all the nurses and doctors. She had a good night, rested most of it and today they moved her to a different room (where she shares a nurse with another patient, which is good, b/c she is no longer in need of 1 to 1 care). Today they will focus on keeping her comfortable and getting her to eat. She is acting like she really wants to eat, but did not latch on to the bottle yet. She must eat from a bottle before they let her nurse and E and I have yet to get her to take one! The nurse has assured me she will. We won't be able to hold her till tomorrow, but are so looking forward to it! She is a trooper and seems to be recovering rapidly. Thanks again for all your thoughts and prayers...it's working!!!

Pre op

Eric and I and Lila Grace went for Pre op today. I personally thought it was really helpful and relieved a lot of anxiety, E is still a little nervous. I feel much better about the surgery and recovery and confident we have not only one of the best congenital heart defect surgeons, but also a very competent team of professionals that deal with this everyday. The nurse gave us the scoop on the surgeon, Dr. Mendeloff trained with one of the "top tiered" surgeons in the world (Iguess there's only 5-10 of those) and then worked for him and now works independently...we are so fortunate!!! We did consult with him and he was very thorough in his description of the surgery, answered all our questions and a very nice guy. He said he does 400-500 congenital heart defect surgeries per year, but about 15 TAPVR repairs. We seriously got information overload today, but here are some of the main details.

-surgery is at 6 am on Monday
-surgery will last roughly 6 hours
-Lila Grace will spend the first night in ICU (while on the ventilator)
-when she's ready (probably day 2) they will take her off the vent and move us to a room on a floor with a round the clock Cardiologist
-she will be here 2-3 days, hopefully getting stronger every day
-then they will move us to a recovery room, where she should be almost completely recovered, but will be monitored for a couple more days
-hospital stay could range from 5-9 days, all depending on how fast she recovers
-Once home she will see the cardiologist in 10-14 days. She then can resume normal activity and is good to go!!!

Thank you all for your constant thoughts and prayers. Keep them up as Monday will probably be our hardest day and then it should be uphill from there!

Pictures!!

We had some pictures taken and they turned out really really good. Thought I'd share...

Here's one for Eric!

Yesterday in the car Jack said, "I like Dad." I said, "Well, I like Dad, too!" And Cade said, "Yeah! He's handsome!"

Here's a picture of our handsome fella...

Illustrator: Jack Fortner

Happy Father's Day, E!!! Your Kids and your wife think you're HOT!!

Paranoia has set in...

Ok, If I make it thru the next 2 weeks without losing my mind, it will be a miracle!



Yesterday, Lila Grace had cold like symptoms so I took her right to the doctor b/c they said she can't get sick. Jack had a pretty bad cold, too, so I drug him along as well (w/o making an appt. for him, so I got 2 for 1...is that wrong??) Anyways, I knew they both just had colds, but in light of the situation, figured I better make sure. Sure enough, the Doc said both were "just fine". The doctor said to watch Lila Grace for poor sleeping, poor feeding, irritability and blue around the lips.



So...today she was VERY fussy, acting funny when she ate, her coloring looked off and she didn't sleep well last night. I waited until about 3 and then called the neighbor over to see if I was just being paranoid. She said, No she is definitely fussy and she does look a little different. So I took her in. The Doc said she looked "dusky" and checked her stats. She had the same oxygen saturation as before, ok heart rate, low fever and a goopy eye. Come to find out....poor thing has an ear infection which causes "poor sleeping, poor feeding and irritability"!



So the doctor prescribed meds to treat the ear infection and I really wanted to say, "Can you hook me up too...b/c I AM losing it!!!" Seriously, Can I get a break here?!?!

It's official...She's a Catholic

HA!! Like she had a choice!
Lila Grace was baptized on Saturday. She did really well. She slept thru most of it, until they dumped water her head. Then she pooped and was fussy for the last few minutes. Sister does not like to sit in her own mess!
The weekend was really great. We had lots of family in town and were going to have a big bash with friends as well, but decided to scale it down once we found out about her heart. Her doctor told us we could still have the baptism, though. Eric and I were really thankful b/c we definitely wanted to share this with family and also all the excitement took our minds off things. We had Eric and Christi and the fam, Brian and Michelle and the boys, Gma and Gpa Higley, Mema and Poppy, Uncle Tim and Ed, Lexie and Papa Larry. The only ones missing from my family were Em and Dan and Ella Kate...we sure missed you guys!!
My siblings and their kids all stayed here at our house. So if any of you neighbors are wondering how many can sleep in a media room...we had 10 comfortably sleeping kiddos!!
Everything went great and we are so happy for Lila Grace. Her Godparents are Uncle Brian and Aunt Christi. I know Christi will provide lots of religious guidance for her...but have my doubts about Brian...JUST KIDDING! We are very happy they accepted!

Sister Rules

I was doing laundry yesterday and I walked into our living room and the boys had made this "castle" for Lila Grace. They were kneeling outside of the castle saying, "All hail the Queen!" So funny how one little person can change the whole dynamic of the family. I've officially been dethroned...

Sister slept thru the night!!!

Sister slept from 10 pm to 6 am last night! Woohoo! Of course in light of recent events E and I were up there like every hour checking on her.

Also, wanted to let everyone know (b/c I know my Mom gave the link to my blog to several people) she is doing great! In fact she's the same as she was before we got the diagnosis. Like I mentioned previously, you would never know her heart wasn't working properly. She still eats well and sleeps well (yay!!!) and smiles all the time. The doctor keeps referring to her as a "blue baby", b/c she isn't circulating enough oxygen thru her entire body, but she looks pretty as a peach to us! The doctor told us to watch for certain signs or symptoms of respiratory distress...but we've seen nothing! Thank God! Now we will just anxiously await the surgery. Seriously uncool that they scheduled it 3 WEEKS OUT! She's sleeping thru the night...but E and I will not...for 3 more weeks!!! Thanks for all the prayers and support.

Lila Grace News

Eric and I found out yesterday that Lila Grace has a congenital heart defect. It's called Total Anomalous Pulmonary Venous Return. It's really hard to explain exactly what it is...I'm still really confused. Here's a link talking about it www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/tapvr.htm. Basically her heart is not functioning correctly to provide enough oxygen for her body. She can't live with this condition and is in need of surgery soon. If it went undetected and un repaired she could have congestive heart failure. Please know she is not in any immediate danger. They put her on 2 medicines to help her in the mean time. Eric and I had no idea as she is a happy healthy baby. Our pediatrician detected a heart murmur at some of her appointments and suggested we see a specialist, but she thought it was, "no big deal". So you can imagine our shock after seeing the specialist. The pediatric cardiologist said it's a very rare condition.
The silver lining in this is after Lila Grace has the surgery she will be "fixed" for the rest of her life. Her surgery has been scheduled for June 29th. It is open heart surgery. She will undergo 6 hours of surgery and then spend a week in ICU. Please keep her and us in your thoughts and prayers.

A Jackism

Today I was running errands with the kids in the car and we passed a Walgreens and CVS (b/c you know how they are always together) and Jack said, "Hey Mom, I know how to spell Walgreens...C-V-S!"

Are we kinder ready or what????