Now Recovering.

Savannah had her surgery today. Overall it went well. She had ear tubes placed, her palate repaired and her tongue tie snipped. She has a suture holding her tongue forward at the moment and a tube in her nose to help her breathe. She is very very swollen right now and she is currently being monitored in the ICU to see if she needs to be intubated to help with breathing. She is in a lot of pain and is doing a lot of moaning and crying. They are keeping her well sedated and medicated in an effort to keep her as comfortable as possible.

I don't quite know what I was thinking but this is so much more difficult than I expected. This is the hardest thing I have ever done in my life and I am sure Brian would agree. At least each day should get easier from here!

Green Light

We met with a great pediatric ENT (ear, nose, throat) doctor today. He was able to squeeze us in with only a 3 day notice. Our last ENT appointment that was canceled on Monday took us 2 months to get in! The doctor we met with today was extremely nice and left the decision up to us if we wanted to get ear tubes on Tuesday. If we wanted to go ahead he would make the time and be there even though it is VERY short notice and if he couldn't for any reason he promised that his partner would be there.

Even though Savannah's ear infection has resolved she still has some fluid in the ear. They did a vibration test and her ear drum would not vibrate. So we made the decision to go ahead with the tubes. The doctor believed that she would eventually need tubes and we don't want for her to undergo surgery two separate times if she doesn't have to. So we are currently on the count down to surgery which is scheduled for Tuesday at 12:30pm. The ENT will place the tubes and then her surgeon with come in and repair her palate. Overall, she should be out of surgery in approximately two hours.

I just want it to be done and over with already!!!

Surgery?

Surgery is currently on hold due to lots of insurance and doctor drama. We are hoping to get it all cleared up in the next day or two and complete the surgery as scheduled. It is just upsetting when it was their mistake and not ours. Please keep us in your thoughts and prayers. If we don't get surgery done in the next 2 weeks it is possible that it will be delayed until October because our doctor is going on maternity leave and apparently no one else is talented enough to operate on Savannah...

Two weeks!

We had a recheck for Savannah's ear infection yesterday and her pre-op appointment today. Everything is happening so quickly now! At her recheck her ears looked good but one ear drum was still slightly bulging so her doctor prescribed one of the strongest pediatric antibiotics there is. She wanted to be sure that the ear infection was completely clear before Savannah's palate repair surgery in two weeks from today.

Savannah loves her puppy!

At the pre-op appointment we met with the surgeon who described the procedure as "trying to sew two pieces of wet toilet paper together". Thanks that doesn't add to the stress level at all! We talked about what time to get to the hospital, how long surgery would take, the recovery time, and how we will feed afterward. As long as she remains healthy for the next two weeks... (crossing fingers, knocking on wood) we will check into Rady Children's Hospital at 10:30am with surgery scheduled for 12:30pm. The surgery will take approximately two hours. She will stay in the hospital until she starts taking her bottle again. That could be the same day or maybe a day or two depending on how she feels. The worst part of the healing process should be over in about two to three weeks.

 Yes, she is chewing on her sock!

If she is congested at all they will postpone the surgery. The palate repair will close off one of the ways she is currently breathing and her smaller chin can also cause breathing problems. For after surgery we were already given arm restraints. It is going to be a tough few weeks since she is a thumb sucker and loves to put EVERYTHING in her mouth!

Bad Mommy!

Today was Savannah's six month well check. At least it was in the neighborhood of 6 months since it was originally scheduled for May 17th. The week before her surgery is scheduled. I didn't want her vaccinated just one week before her surgery (too much stress) but I also wanted her to be current since she could be exposed to a lot while in the hospital. The telephone clerks were adamant that there were no appointments any earlier. I asked to have a message sent to her doctor about the vaccinations. Not much later I got a call back. The doctor said it was far too long to wait for a baby with her "issues" and that we could be seen within the week!

   It's the diapered daredevil!

The appointment was going well. Savannah is currently at progressing at a nine month level. She can crawl and pull herself up to stand. We were concerned though that she had recently started waking up in the middle of the night (very unusual), started to refuse feedings, and was generally fussy the last few days. I thought she was either teething or having some reflux flare-ups. We discussed the options for upping her current reflux meds and also agreed that it could be teething. Until we got to her ears... The doctor took one very quick look and replied she has an ear infection! Then looked into the other ear and confirmed that Savannah not only has her first ear infection but that she has a double infection. I feel so bad. I had no clue that my baby had an ear infection! For some reason I though if she had an infection she would also have a fever and be tugging at her ears. Boy, was I wrong!

 It was a tough day for Savannah, being both vaccinated and having an ear infection. But we took a trip to the Wild Animal Park and she actually stayed awake long enough to see some ducks, pelicans, and a whole lot of butterflies! She watched in silent awe as hundreds of butterflies flew around her!

Surgery Scheduled

Savannah's surgery has officially been scheduled. As long as she is healthy and does not get another cold, her surgery is scheduled for May 24th. I wasn't really stressed about it before. Maybe because it seemed so far away and I tried to live in the moment and not give much thought to it. Now that I spoke to the scheduler and booked the date, it became a little overwhelming to be honest. It is going to happen very soon and there is nothing stopping it. My baby has to have surgery. Thankfully I have a good support system both with family, friends and an online chat group for cleft babies. One lady said tonight "remember you are doing it for your babies, not to them". It is so true and it helped a lot.

Most likely she will be undergoing two procedures. She will have her palate repaired and will probably have ear tubes placed at the same time. The reason I say most likely? Our ENT appointment is not until May 17th. They will be seeing her for the first time and deciding on surgery just one week before it is scheduled! Thankfully they are keeping the date reserved in case they approve the ear tube surgery. In the meantime Brian and I will be taking a lot of Airborne/Zicam and making sure Savannah does not go around anyone sick if we can help it!

Another appointment, Another day...

We met with Savannah's geneticist again today. She was pleased with the eye exam results and with Savannah's overall development. We surprised her when she asked if Savannah was rolling over yet and we exclaimed "she crawls now!"

She asked about possibly doing some more genetic testing for 2 possible Stickler genes. We declined. It is just not worth putting Savannah through a blood draw to possibly get an answer. Truthfully, it would change nothing. She is ours and we are going to take care of her no matter what. I really don't think it would affect our decision to conceive again either. To have a baby with isolated case of PRS or Sticklers syndrome again is small and not worth testing for simply to get a chance at an answer.

Meanwhile Savannah is cruising through her milestones! She can sit up on her own, she can pull herself up onto her knees, and she can crawl. It is still a slow crawl but she is steadily moving forward! Thankfully she is still sleeping through the night (knock on wood!) and she is still steadily gaining weight. Although she was measured incorrectly last doctor visit. She is either in the 12th percentile for length as she has always been or she has shrank over the last two weeks.

Our next appointment? April 18th for our 6 month well check. Seriously, where did that time go??? After that we see an ENT mid-May. We will be back to see the Geneticist after Savannah's 1year old eye exam. I have a feeling Savannah is going to be a busy girl when she turns one and will be seeing a flurry of doctors yet again.

Finishing this post with a common view at our house. Savannah's tiny but cute butt crawling away!