Avery's Family

Avery's Family

Thursday, June 30, 2011

Another busy week with appointments

                                                                    HEY YOU!

                                                                    Your to close
                                                              Sleepy girl
                                                    Smile with one eye open, Can you do this?
                                                              Baby Blues
                                                                     Look at all my hair
Week started off with Avery's 2 month visit for shots on Monday. She is actually 2 and 1/2 months, with all her other appts I almost forgot about her normal ones.  I was a little bummed when she didn't cry after getting 3 shots in her thighs. I know the feeling in her legs is sporadic, I was just expecting her to feel it. Its really hard to know what she feels and what is just function, time will tell.   She now weighs 8lbs 15 oz and is 21 inches long. She has doubled her weight and has grown a little over 4 inches. Today we had physical therapy, Dan (physical therapist) worked with Avery on her head control and getting her attention with lights and music, seeing if she would reach for things. Tomorrow we have an appt with pulmonary. I'm really not sure what they are going to do, since we have already found that Avery needs the oxygen.

Tuesday, June 21, 2011

Just an update

           This is Nicole, who works at U of M. She was also diagnosed with spina bifida when she was born
                          This is the cast she had only for the weekend, after they took off the other cast.
                                This is Doctor Buchman of plastic surgery who helped in closing Avery's back
                                                        Great Grandpa Max with baby Avery
                                                     Great Grandma Dollie with baby Avery

Spending lots of time at U of M for physical therapy. I will probably be there everyday this week, so I can learn to wrap Avery's foot and learn the stretching and massaging techniques. We are also working with her on development as well, she should be holding her head up better than she is. As far as her hearing goes, left message with neorology and waiting to hear back. Wanting to know what the next step is. Here are a couple pictures of last week.

Wednesday, June 15, 2011

Another eventful day

Today we had Avery's hearing test. I was at the hospital at 7:30am for her appt. She had to be asleep during the first 45minutes of the test. She did good. During the test I found out that the reason for the test was because she failed in her right ear the first time it was done in the hospital before she went home. Funny how no one mentioned this, maybe they figured I had enough to worry about. I had never seen this type of test done before, they put little electrodes on her forehead and on the sides of her cheeks by her ears. They put these plugs in her ears that made different noises.  This test measures how the hearing nerve responds to sounds from the brain stem. What we found out was that Avery has little to no hearing in her right ear and some hearing in her left ear. This is another side effect of the Chiari. This poor little girl needs your prayers. The surgery for the chiari is not an option right now, because Avery is so little, and if it were an option we are not gauranteed it would work.

Monday, June 13, 2011

The rollercoaster

Last night I did my normal routine with Avery, give her medication, a bath and then dinner. While she was eating she choked and had a seizure. Of course I didn't realize it was a seizure until I spoke with the neurologist this morning  and she told me that's what it sounds like. She told me that if it happened again to take her to the emergency. Well, I really don't want to experience that again. Avery also had her urology appt. this afternoon. They did a pressure test on her bladder and found that the pressure is high., so starting tomorrow I will need to catheterize her every 4 hours. They will test her again in September. We knew that this time would eventually come, I was just hoping for her to be a little bigger. She is such a small bean.

On a better note. I can't thank you all enough for your generosity, prayers, comments, meals, gas cards, bake sales to raise money to help us get Avery to and from the hospital.  I wish I could personally thank each and everyone of you. I love all your words of encouragement, it really gets me through each day. I love that you all have chosen to be apart of our journey. Thank you!!!!!!!!

Sunday, June 12, 2011

A bit of a scare

The last couple days we have a monitor hooked to Avery to monitor her oxygen saturations. I would like to say she did great the entire time, but thats not the case, she has a lot of low saturations while she is sleeping, but does really well while she is awake. I have noticed quite a bit of choking while she is eating. I'm not sure what this is caused from. Today she choked so bad that she turned completely blue. It scared me to death. There really isn't a pattern with the choking, she chokes with the oxygen and without it. I do notice that with the oxygen, she recovers quicker from the choking. I'm afraid to feed her now. I will be contacting the doctor tomorrow.

Thursday, June 9, 2011

Another long day!

                                                 This is the thing they put her in to do the x-ray on her
                                                  throat, she didn't even cry, poor thing

Avery had an appt today at 8am  for an ultrasound of her head, at 9am she had an x-ray of her throat to see if there is anything blocking her airway. At 10am she saw neurology. They read the ultrasound and x-ray and decided she should see the ear nose and throat doctor to check her airway through her nose. She ended up getting a scope put down her nose with a camera, they found that her epiglotis is a little enlarged, which could be causing the snorting and loud breathing.  They decided to get me a monitor to check Avery's breathing while she sleeps for the next 2 nights. Then they will decide if she needs the oxygen or not. I didn't get home today until 4:30pm. It was a long day. I'm excited I don't have to go to U of M tomorrow. Yay!!!!

Wednesday, June 8, 2011

Pulmonary appt

Today Avery had her pulmonary appt. to check and see how her breathing was. They hooked her up to a monitor to check the oxygen in her blood, she stayed at 100% for 30 minutes. That is great, except they can still see she is having periodic breathing. She also snorts a lot when she is on the oxygen, so tomorrow the are doing an ultrasound of her throat, to make sure there is nothing being blocked.  We will then have another ultrasound done on her head and see the neurologist after that. Another full day at U of M. I am a bit frustrated about the oxygen situation. They told me they want to keep her on th oxygen for another couple months, until they can get her in for a sleep study to see if there are any other things causing the periodic breathing. The problem I have with this is i can't seem to keep the oxygen in her nose, because she pulls it out. They suggested putting socks on her hands, which I will give it a try but I don't think that will hold Avery back from pulling it out. Every morning I wake up her oxygen tube is under her chin. A lot of good that is doing. I wish the doctors would monitor her for 24 hours to see if the oxygen level in her blood drops, if it doesn't she really doesn't need the oxygen. Periodic breathing is common in newborns and if there oxygen saturations are good they don't need the oxygen. Ok I know I'm not the doctor, but its so frustrating.

Monday, June 6, 2011

3rd surgery

Started my morning at 4am with Avery's last feeding before her surgery. Was at the hospital at 6:30am, surgery at 7:30am, surgery done and feeding Avery at 8am. I went downstairs to the waiting room, got a coffee and a bagel, didn't even finish one half and they called me back upstairs and said they were done. If your going to have to have surgery, thats the way to do it. They used a topical cream to numb the area, so there was no anesthesia, which means she didn't need to be admitted. Hurray! Next appointment is wednesday with the pulmonary specialist to see about getting rid of the oxygen and thursday we see the neurologist and get an ultrasound of her head, to make sure everything is working ok.

Sunday, June 5, 2011

I'm back

                                          Avery's back is completely healed
Lost our internet for awhile, due to some technical difficulties, we are back and running. Wow, where should I start. I feel like so much has happened in the last week in a half. Avery has been seen by the home visiting nurse 3 times since we have been home, they come in between the other appts. She now weighs 7 and 1/2 pds. They no longer will be coming to the house since Avery is gaining weight. Yippee! Yippee! Avery practically sleeps through the night. She sleeps 6-8 hours in one stretch. How did I get so lucky? While she sleeps really well at night, she eats all day long to make up for it. Everyone in the house has come to really enjoy having a little one around, she never gets put down since there is always someone begging to hold her. She is pretty cute! She has changed so much in the last week its amazing. I have really began to get to know her personality , which happens to be very strong. When she wants something, you better believe she'll let you know. She has rolled over from her tummy to her back already and pulls out her oxygen on a daily basis, multiple times. Last week was pretty busy, wednesday the nurse came to the house and discharged Avery, thursday Avery had an appointment with physical therapy and an ultrasound on her hips, which turned out fine and friday she had an eye infection and had to go to her primary doctor to get eye drops. While at her physical therapy appt. they suggested Avery have surgery on her achilles tendon which will help with straightening her foot. So tomorrow we have to be at the hospital at 6:30am, surgery at 7:30am and she'll be done at 8:30am. Then they want to admit her for 24 hours to keep a close eye on her. Just when I thought there were no more surgeries. Surprise!!!    Jeremy has to work, so it will just be Avery and I. Luckily the kids are still in school, so I don't have to worry about figuring out where they will go.