Post Cleft Palate Surgery...2 week update

Today marks 2 weeks since Janessa had her cleft palate repaired and also tubes put in both ears.

I cannot begin to explain just how much this surgery has changed her life already and am so thankful that we live in place and time where things like this can just be "fixed".

We have come to realize just how much she could NOT hear before this surgery. With a baby, you don't always realize that they aren't doing the "normal" things that a baby does because they all do things at different times.

Before her surgery, Janessa would dance if she heard music. Now, we realize that she only danced if the music was right next to her or really loud. Now, if there is something faint and in the distance she not only stops to dance, but she also sings along...so precious!

A few days post surgery, we were all in the car and our older two were in the back laughing about something...Janessa mimicked them and joined in...adorable.

She is making sounds she just plain could not make before without the roof of her mouth. goo goo, gaa gaa...normal baby sounds had never come out before.

Before surgery she called us all mama. Now she is saying Hi, Bye bye, and dada....two weeks folks!

She just needed to hear.

What an amazing blessing.

And...on top of it all....food no longer comes out of her nose when she is eating! Yay Janessa!

On Tuesday we go the all clear from the doctor to take her arm braces off and let her go back to "normal life". Here she is walking with her push toy today...she is usually much faster but it is still cute!

1 Week Post Surgery

Sorry for the lack of updates... I will blame it on lack of sleep!

Janessa is doing fabulous! Her healing process has gone much smoother than I expected. She is barely taking any Tylenol or Motrin at this point and is pretty much her normal self. She doesn't seem bothered by her "no-no's" (arm braces) and for the most part she is sleeping...though today she refused to nap! I do think if I could give her pacifier to her, life would be a bit smoother but that can't happen for at least another week!

Here she is today. Emptying my grandma's cupboard and making a silly face for the camera!

She is already a child who LOVES to get into places she's not supposed to...although, I watched her do this one!

I am very happy about her progress and wanted to thank you all for your prayers for us as a family. They were felt and they were appreciated! 

Thank you from our entire family!

Still Here For Now

I will ask once again for a few more prayers on our behalf. Janessa is doing awesome overall. She is fairly happy, when medicated, and starting to blabber and giggle so that makes me happy.

However, she still has not taken a bottle. She needs to do this before we can go home. they turned off her IV fluids a couple of hours ago hoping that she would feel more hungry and thristy...but so far...she just doesn't care.

If she doesn't do it soon, the IV fluids will be turned back on and we may have to stay another night!

I, for one, would love to come home and sleep in my own bed but of course we want our peanut to do the best she can.

The nurses and staff here are great and we feel fortunate to be so close to a great hospital.

On the bad side of things, we lost our ipad in the shuffle of things yesterday and haven't been able to locate it yet. It is in locked and lost mode now so please pray that if someone finds it, they will be kind and return it to us. We had 2 garage sales last summer to earn the money to pay for it and wouldn't be able to buy a new one any time soon!

Surgery Day...So Far

Here we are, waiting in the waiting room for Janessa to get out of surgery. Here is a synopsis of our day so far:

9:30--We arrived at Strong and Janessa played in the waiting room until about 10:00

10:15 am-- the nurse came and checked her vitals...they were perfect!

10:20 am-- Our Youth Pastor, DL, and Worship Pastor, Mike came to visit and pray (they also happen to be good friends)

And then we waited...and waited...and Janessa fell alseep in Daddy's arms before realizing how hungry she was...

11:30 am-- Janessa woke up...and she was hungry...so we entertained her...

...and she continued to be hungry until they FINALLY came to take her at around 1:00 pm

Thankfully she likes strangers and this wasn't heartbreaking!

At 1:30 pm, the ENT came out and told us that she is doing great. Her ear tubes were in and VERY necessary!

That is all for now but will keep you posted. Thank you for all of your prayers!

Cleft Palate Surgery

It's here...well it will be here tomorrow

We will be taking our sweet baby girl into Strong Memorial Hospital at 9:30am to have her Cleft Palate repaired and tubes put in her ears to prevent future infections (or at least many of them!). Prayers are appreciated.

I do plan to update throughout the day on her progress for those who are interested in following along. Right now, we really do not know what to expect in terms of recovery but supposedly it won't be too bad. This worried mama would like to be sure of that!

So....here is a picture that my cousin (Thanks Christi!) managed to capture on accident a few weeks back and it actually allows you to see the hole in the roof of her mouth: (Don't mind the drool)

Tomorrow morning, God willing, her is a picture of what they will do:

Seems simple enough to me. As far as we know, Janessa will wear elbow restraints for 2 weeks to prevent her from touching her mouth or putting anything in it. They say that she will be uncomfortable just for a day or two with soreness and pain but it will be easily controlled with medication. She will be unable to use her pacifier (sad for mommy and daddy). 

That is all we know for now. We will keep you all updated and appreciate the prayers!

New Surgery Date

Janessa's surgeons are awesome. While I was happy with the fact that her ENT was going to do the tubes this week to prevent more infections, they still rearranged their  schedules and the hospital accommodated them. They are able to do BOTH procedures on February 28th (2 weeks from now) so she will only be under anesthesia once. I believe if the same problem happens again, we will not be the ones that are rescheduled so I am thankful for that and am thankful that I trust in the Lord and am able to see that somehow this is his provision and protection for us...


....but man am I tired!

Surgery Cancelled

Thank you all for your prayers this morning, however, Janessa's surgery was cancelled. Apparently they discovered at 6:30am that there weren't enough beds for the surgical patients today so they called us at 6:58 (while we were pulling into the parking garage) to let us know that.

Obviously I am still a little bit angry at how the hospital runs especially after speaking to the man who was in charge of all of this. However, we do realize that this is all in God's hands and for whatever reason, it is in Janessa's best interest to not have her surgery today. I am just upset at how Strong apparently deals with these cases.

I will update when I know for sure when her cleft surgery will be...it is not rescheduled yet at this point but is in the works.

I did however speak to the ENT who was putting tubes in her ears and she will be going ahead with that sometime this next week to prevent further ear infections. She called me at 7:45 this morning and was SOOOOO incredibly nice. She was fine before with waiting to do the tubes so that Janessa could just go under anesthesia once but now that it is delayed, she does not want to put it off any longer.

I am very thankful for her as my biggest concern in all of this is Janessa's hearing.

Again thank you for your prayers and sorry for the false alarm!

I will update again soon...after I take a nap!

Prayer for Janessa

In the grand scheme of things, I tend to think we are pretty lucky. Yes, Janessa was born with a cleft palate, but it can be fixed. I feel bad for her because of the pain it causes her ears and because when her food comes out of her nose, it is probably fairly uncomfortable but really...her problem can be fixed and therefore we are blessed.

Sometimes this causes me to not ask for prayer when maybe I should. If other people are struggling with much bigger things than why should I bother people with what is going on in our home. Well...enough of that...we could use some prayer!

2 weeks ago, Janessa was diagnosed with her 5th ear infection (this one a double one). They put her on an anti-biotic which she finished this past Friday and I hoped this would be her last one before her surgery to correct this problem once and for all. However, she didn't really seem to be better. She has still been tugging at her ears, yesterday she started coughing and last night she woke up crying a few times (usually she sleeps a solid 11 hours). So...off I carted her to the doctor today for what I thought was another ear infection. Only, it wasn't. Her ears are still congested and are constantly susceptible to infection but the doctor was more concerned with her cough. He said it sounds like RSV.

Great.

My mind immediately went back about 3 years ago where I stayed with Libby for a week at Strong Hosptial. She had RSV and was only 6 weeks old.

Libby Grace with RSV in February 2010

So after that 20 second panic attack, I came to my senses and realized that Janessa is older and it probably isn't going to go down the way it did with Libby. 

He continued to tell me that RSV gets worse until day 5 and that if she indeed has RSV, the cough can last up to 6 weeks

Great.

Her surgery is scheduled for exactly 3 weeks and 2 days from now. Apprently if she does have RSV and the cough does persist, her surgery may have to be rescheduled!

NOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO!

So....We would covet your prayers that:

a) Janessa does not have RSV, just a virus or soemthing else

or

b) If it is RSV, that it would resolve quickly and not effect her surgery date.

In the meantime. We will be keeping her with us at all times. No more nursery at church (sorry Nursery workers...I know she is fun!) I know that we can't hide from all germs. We could pick something up at the grocery store just as easily as other places but for now, we will just keep our baby girl with us until we can get through all of this fun! 

Thanks for your prayers...and for reading this long post!

Janessa...updates on her condtion

A few things to update on....There's good news....and not so good news....

Last week on Tuesday afternoon, I took Janessa to meet the surgeon who will fix her Cleft palate. Dr. Girotto is a plastic surgeon and does this surgery all the time. We really liked him. He obviously knows what he is doing and gave me all of the information that I had been wondering about without me even needing to ask...seems that most people have the same questions as me...go figure! 

What we can expect is that the one night she will spend in the hospital will be awful. She will be uncomfortable, not want to eat and won't sleep well. Then we will get up in the morning and will be told that we can go home. Dr. Girotto told me that we will think they are CRAZY for sending us home. Then, by 12 or 1pm, all of a sudden Janessa will turn a corner and start acting normal and we will be ready to leave. 

I know all of this sounds really strange, but it was so comforting to me to know that these are the emotions that I should expect. It now won't be a shock to me when I feel this way.

Also, he eased my fears about the arm braces that she will wear for 2 weeks (to prevent her from putting her hands in her mouth). He said, at this age babies basically wake up from surgery and think..."oh...God took my elbows away. Oh well." and they just go on with life. Also, she will need to be without her pacifier for 2 weeks which means that sleeping will definitely be an adjustment during that time. We are trying to get her attached to a little blankie that she can snuggle with....we'll see....she really likes the binkie!

On Friday, we met with the ENT, Dr. Benoit, who will be putting the tubes in her ears during her surgery. (Because her mouth isn't formed correctly, she is very prone to ear infections and fluid in the ears).We also got to see a Nurse Practitioner, Keri, that I used to babysit her kids! She eased my anxieties in telling me that Dr. Benoit did her own daughters tonsillectomy. Thankfully we have made it thus far with no ear infections....supposedly that is rare. 

They decided to do a hearing test while we were there so they would have a baseline to compare to after her surgery....this is where the not so good news comes in. 

She fell asleep before they started the test and stayed asleep through the whole things which actually makes the test more accurate.

And then she failed the first test SIX times!!! Three times in each ear. The audiologist was obviously not wanting me to worry so she passed it off as a "not to worry" thing, and said they have a more accurate test in a sound proof room...so we headed over there. She failed that too.

To give you an idea of what it was like this would be what the results would look like in a "normal" exam.

Although I can't find a good picture of what Janessa's looked like, the arc was somewhat like this...

Yep...not so great. 

So, what does this mean? Well, basically it means that our baby girl has lots of fluid behind both of her ears. She can definitely hear us because she responds, however, it would sound to hear as if we are under water. So...the ENT called me on Friday afternoon (of course I had left my phone in the car) just to make sure that I wasn't worried all weekend. Then, she called first thing this morning to make sure that I understood and wasn't worried. 

They contemplated doing to the tubes now to get the fluid out, but with the palate not being fixed, it could cause more issues (uh...the poor kid already has milk come out her nose...well...it would then also come out her ears!) so they are going to wait unless she starts having ear issues. 

The Surgery will be in February...I should hear back today on a date! Like any mother, I am nervous about the anesthesia but I also know that without this surgery she would have a multitude of problems. In the grand scheme of things, this is an EXTREMELY minor problem for a child to have.

Sorry for the long post...this is as much for my own memory as it is to keep others up to date!