Wednesday, October 28, 2009

Beauty Queen

Sometimes I like to pretend I’m a photographer – it’s just too much fun and she's just too beautiful!

There’s a First Time for Everything – 10/16

Last Friday, Averi experienced her first trip to the ER. I’m impressed she made it over 5 months without going. At about 5:30 pm she started refluxing so we vented her G-tube to let out some of the air she had swallowed. That’s when we saw a bright red, pea-sized blood clot come out. We dumped it out and left it vented. After two more bright red clots came out (we’ve never seen that many at once or had them be so fresh before) we decided to call the doctor’s office.

Of course they close early on Fridays so I waited on hold for 25 minutes, had my phone hang up on me, waited another 20 minutes, and finally talked to the triage nurse who told us that we needed to bring Averi in. I was sick so I stayed home with Kaili. (Another first, Dan had never been out with Averi by himself before – not that he couldn’t handle it).

Well, we all know how ERs work so I’ll keep this short - some sick two-year-old in the waiting area literally crawled into Averi’s car seat repeatedly while Dan pulled her out and her parent was nowhere to be found, Averi was taken to a room, vitals were taken, Averi was sent to radiology to make sure her tube was placed correctly, blood was taken, it was decided that she was fine and it would be pursued in 2 ½ weeks during her endoscopy, and they arrived back home at 11:30 pm.

Let's hope we don't need to return any time soon.

Tuesday, October 13, 2009

Good-bye Monitor? - 10/6

Last week we went to the Neonatology Clinic for a check-up. Nothing too exciting happened, which is why I didn’t post about it right away, but I needed an excuse to use this really cute picture of Averi having a moment with her giraffe. (It was lying on the ground next to her and she totally rolled over on her side and stared it in the face for like 15 minutes straight.)
Averi’s monitor has been having brady (low heart rate) alarms lately when she is sleeping. It used to only go off when she was refluxing and couldn’t breathe. The neonatology clinic downloads her monitor so they looked at the recording and said it is probably just because she is getting bigger and has a lower resting heart rate.

She then told me that we probably don’t need the monitor anymore. I was stuck between relief of not having to carry it around anymore and paranoia that she would start refluxing during the night and we would not hear her. Just as I was accepting it, she came back and said that Averi has to keep the monitor until after her surgery but we need to start weaning ourselves off of it.

Now it only has to be on at night, while riding in the car, and when she is unattended. It’s nice not having it on all the time and carrying it around, especially when we go out, but I can still sleep at night.

As far as the rest of the appointment, she is growing like crazy, weighing in at 10 pounds 12 ounces (finally double her birth weight at 5 months), her muscle tone is great, the dietician gave us an updated feeding advancement, she’s being referred for OT and PT, and we’ll go back after the surgery.

Friday, October 9, 2009

Surgery Date

They finally called me this week about scheduling Averi’s surgery for her laryngeal cleft repair. The big day is going to be Tuesday, November 3. Here’s to more waiting! :)

Wednesday, October 7, 2009

Raspberries

Averi’s latest trick is blowing raspberries. She can often be heard lying in her bed happily blowing spit bubbles. I managed to get a short video of it, which was tricky because she doesn’t do it on demand. I love it!

video

Monday, October 5, 2009

Tubby Time

Baths are hard to come by for Averi because it is such a long process. Recently, however, she has really started to enjoy her tubby time so I may have to sacrifice and start giving her baths more often.She found her toes for the first time during her last bath and I couldn’t get her to look at anything else. It was super cute! I have a video but I can't get it to upload so you'll just have to take my word for it. ;)

Big Girl

Sometimes I feel like Averi is growing up so fast and I’m so busy taking care of her medical needs that I don’t have time to sit and enjoy it. A lot of big steps have happened in her life lately!

I came home from a church meeting a week ago and Dan “surprised” me by moving all of Averi’s stuff out of our room and into the nursery. I thought it was easier to get up with her during the night when she was just right beside the bed and I knew I could hear any alarms going off but he thought she was getting too big for the bassinet. Now she looks tiny in her big crib! It is nice having more space in our room again but I miss being able to just roll over and check on her. (We’ve also been able to start using gowns since her G-tube doesn’t stick straight out anymore. I love gowns, they’re so dang cute!)

Averi has also strengthened her neck muscles enough that she can hold her head up for short periods of time. This means we have started sitting her in her Bumbo chair. She loves being able to see what’s going on around her. It also gives me an extra hand when we work on reaching for and grasping objects. This was her first time in the Bumbo, I giggle every time I see this picture!Now that her G-tube site is feeling better and she is recovering from her heart surgery, she is a much happier baby! The other night she would not stop smiling at me. I made Dan take like 50 pictures. She makes some of the best faces, my favorite being her “grandpa” face. She has even started trying to talk to us and imitates a few sounds.
video

She has even started laughing. I can’t get enough of it, even if it is wimpy. When she smiles, her whole face lights up. It’s contagious!

video

Friday, October 2, 2009

A Step in the Right Direction – 9/24

It only took me a week to get this all written up but this was another long day of appointments (as you can tell by the length of this post)! Surprisingly, it was a very productive and encouraging day. Here’s how Averi felt about the day’s events:
ENT
First, we drove all the way to Dublin (an office 45 min away because there weren’t any appointments available at the hospital) for an ENT follow-up. We met with Dr. Wiet, the doctor that did the scope. My goal was to not leave this appointment without a date for Averi’s surgery (to sew up the laryngeal cleft). He said that her chest incision looked great and he would have his secretary call us to set a date. Yipee!

I also asked him about her failed hearing test on her right ear. He sent me to audiology next door to test for fluid. I was worried that this would take too long and we wouldn’t make it to the next appointment at the hospital (another 30 min drive) but the wait wasn’t too long. The audiologist blew air into her ears to test if her eardrums responded and both ears looked good, meaning that there is no fluid behind them. During her last test, there was fluid in her right ear, which could be a reason for a failed hearing test.

Dr. Wiet said that he wanted to retest her hearing and that they could do it during the surgery’s anesthesia, when they know she will be asleep. This was great news because a hearing test consists of depriving your child of sleep so that they will sleep quietly for the 45 minute test where they have sponges shoved in their ears. Now we can kill two birds with one stone.
GI
We then drove to the hospital for our first GI appointment, you know, the referral appointment that was made about her pooping blood the first week of August. My goal for this appointment was to get some answers about her G-tube. Since surgery put in her G-tube, they have to do all the follow-up. I have talked to several doctors about getting a referral for GI to follow her G-tube and it can’t happen. The GI doctor that visited her in the hospital even said he couldn’t answer any questions.

I explained to Dr. Punati that Averi started pooping blood, along with diarrhea and crankiness, stopped when she was put on Alimentum, and hasn’t had anymore since I went on my total elimination diet (no dairy, eggs, soy, wheat, nuts, or shellfish). She said I could continue adding foods back in every two weeks (I already added wheat this week) until we figure out what I can’t eat.

She also said that the blood could be from trauma to her stomach from the G-tube (now really?). Everyone in surgery told me that blood from that high up her GI tract would be black but she said that Averi’s system is so small that it could still be bright red when it got to her bowels. So, she is going to do a scope of Averi’s stomach, also while she is already out for the surgery, to see her tract from the inside and find any damage. Finally! Now we’re killing all kinds of birds with that stone. :)

She also actually looked at Averi’s stoma, suggested I put Maalox around the site to help keep the acid from irritating the skin, told me how I could clean the inside of her tube (with Sprite), and changed her reflux medicine from Prevacid to an even stronger medicine called Zegerid. She answered all my questions and never once mentioned that it wasn’t her G-tube. Halleluiah!

Surgery
The day was going well and we had yet to be late, but we still had our surgery appointment. I was not leaving there until someone actually took out her G-tube and looked at the red tissue bulging from it, even if it was just to tell me that it was in fact granulated tissue (beefy looking scar tissue that starts to build up in response to trauma).

We went in and Dee, Dr. Teich’s nurse that knows us by name because I have called her so many times, looked at me and said she was feeling rebellious and was going to measure Averi for a Mickey button. Wow! Every time we go there they always tell us that she’ll get a button “next time;” well it finally happened.

This has made all the difference! The Mickey Button is like a flip top for her stomach. It just sticks out a little bit and can be closed so that she can wear regular clothes that don’t open down the front for the tube to stick out.The tube for her continuous feed is bent and rotates 360 degrees, instead of having a tube sticking straight out that gets pulled on and irritates her skin. It is measured for the thickness of her stomach (the second smallest size they make) so it fits a lot better and won’t leak so much. There is even a medicine port on the side so we don’t have to stop her feed every time she needs her meds. It’s the small things in life that make you happy! :)Overall it was a great day and it looks like things are starting to move in the right direction!