Love having Avery home

Daddy and Avery at their best

                                                    proud brother

                                                      The lights are too bright and this thing is bothering my nose

                                                      Big sis and little sis taking a snooze
                                                   
I just can't get enough snuggling time with my girl. She is so sweet. Today she had a follow up appointment. They checked her weight which is now a whopping 7lbs. She has almost doubled her weight from birth. Amazing!!! Everyone has enjoyed their time with her.

First night home

Avery did so well last night. I fed her at 10pm, gave her a bath and put her to bed. She didn't wake up until my alarm went off at 3am. I only set my alarm just in case she didn't wake up and I'm glad I did. Now she is hanging out on the couch watching cartoons with Titan.  I am such a happy momma right now.

After 38 days she is finally home

             Just my luck, got a bad cold the day before Avery came home. Had to wear a mask in the NICU so I wouldn't get the little ones sick.

                                                               On our way home!!!!!!

                                                    Big sister!!!

                                                     Big brother #1

                                                    Big brother #2

It actually happened, Avery came home today. We were discharged a little after 4pm. Its still hard to believe. I find myself staring at her just to make sure its real. With her discharge came a list of things that must be done. Antibiotics 4 times a day, dressing change on her back once a day, antibiotic ointment on her foot 3 times a day, vitamins once a day, massage and stretch her foot 3 times a day, and oxygen all day every day. With that came a list of follow up appts for neurosurgery, plastic surgery, urology, pulmonary, and physical therepy and of course her pediatrician. Wow, who knew such a small little girl could have so many people wanting to see her.The kids were so excited to have their little sister home, as were mom and dad.

YOU JUST NEVER KNOW

You just never know what the doctors are going to tell you next. Jeremy and I went to see Avery this morning and was told they are sending her home tomorrow as long as the ultrasound looks good. We are so excited. There are lot of things to do between now and tomorrow. We have our CPR class today, Avery needs to pass her carseat test, we need to get the medical supply company to bring oxygen to the house, etc. Again thanks for all the prayers and support, I can't believe she is finally coming home!

Things are looking up!

                                            Avery after her bath, this is her first picture without any tubes on her face

                                          Avery getting a bath.  The stiches on her tummy are from where the drain tube is from the shunt

                                          this is where the shunt was put in, you can see the tube under the skin

                                          Mommy talking to me!

So the last couple of days have been a roller coaster. Two nights ago Avery stopped breathing and they had to shake her up a little bit to get her to breathe again. I was sure this was a major set back. To my surprise, things have continued to move forward. All tests came back negative for any possible infection. They pulled her feeding tube and she is taking all feeds by mouth. Her shunt is working fine. They finished the sleep study today and found that the problem has to do with immature lungs. What this means is Avery will go home with oxygen. They are looking to send her home at the end of the week or early next. Jeremy and I are getting CPR certified tomorrow, which is the start of the discharge process. Can't thank you all enough for your prayers, as you can see nothing is impossible.

Breathing not getting any better

When I came in today the nurse told me that Avery was having a lot of periodic breathing as well as apnea, where she will stop breathing and then take a big breath. Doctors are not to happy with this, they were hoping the breathing issue would get better or at least stay the same. They are now looking to see if there is an infection. They have started her on another antibiotic (now she is on three), they are going to draw blood, collect urine, and take some cerebral spinal fluid from her head. She is scheduled to have a sleep study done on tuesday so they want to rule out everything. The sleep study will do no good if the breathing problem is caused by infection.

Still having breathing problems

                                          Averys head looks smaller already

Its been 2 days since Averys surgery and she is still having periodic breathing. The doctors were hoping that placing the shunt would take care of the breathing problem. They said that if it was the hydrocephalus causing the periodic breathing then it would be better by now. The only other possibility would be the chiari. Doctors won't operate unless they absolutely have too on the chiari because of how intense the surgery is on such a small child. I asked what this meant for Avery coming home. He said that worst case senerio would be she comes home with oxygen. The only thing we can do now is pray. Pray that Avery' s breathing will improve and she will not longer need the extra oxygen.

Shunt surgery a success

                                            Avery after surgery

                                              You can see the shunt under the tape

                    They made a little incision on her tummy to fish the tube through. The extra fluid on her brain will drain into her stomach.


After waiting at the hospital for 10 hours, Avery finally had her surgery. It was a success and she is doing well. Thank you for all your prayers, we couldn't do it without you.

Avery's surgery moved to 1:45pm today

Jeremy and I got to the hospital at 10am, thinking Avery would be almost done with her surgery. When we came into her room there she was. They had trouble getting blood from her, so they had to move the surgery to this afternoon. Poor girl, they took blood out of head because they couldn't any where else. The labs came back good and now were just waiting for the doctors. It worked out best this way, so Jeremy and I are able to be with her before her surgery.

Shunt scheduled for 9am

I finally recieved a phone call from the doctor confirming Avery's shunt surgery for tomorrow at 9am. They said it should only take a couple of hours. They were waiting for the plastic surgeon to decide if it was okay for Avery to be on her back for the surgery. They said she could have the surgery as long as she was propped on her side to keep pressure off her back. So a shunt it will be. I asked the neurosurgeon today when she would be expected to come home after the shunt. I was told if everything goes well and her breathing gets better then next week.  I have something to look forward to.

Waiting to hear what day for shunt

                                                                 Daddy and Avery.   Hey how come I don't have any pictures with Avery. Thats going to have to change

                                                     Her back is healing so well

                                                      Daddy holding my hand

                                                        Grandma Rita finally got to love on me

  

                                                          So did Grandpa Les


We are waiting to hear when the shunt surgery will take place, we have been told Wednesday but don't have a time yet. They are waiting to see what the ultrasound looks like today. Avery had her catheter taken out on May 3rd and was able to be put on her back for short periods(15min) throughout the day. She is urinating on her own and has not had to be cathed to empty her bladder. This is a huge milestone, as a lot of children with SB have to be cathed throughout the day because they don't have the sensation to empty their bladder. Yay!!!!

It may be shunt time

Doctors told me today that Avery's ventricles are getting bigger and that next week they might look into placing the shunt. She will have another ultrasound on her head on monday, to see if there are any changes. I was really hoping that Avery would be able to come home next week, but its not looking that way. She is still having trouble with her  breathing, which may be due to the swelling in her head. So bummed!!!! I'm not sure how much longer we can afford to make this trip. The hospital is a 45 minutes away and gas prices are not getting cheaper.

Over another hurdle

                                                            me and my daddy

                                                                       After my bath

                                                                 So sleepy           

Avery got her catheter taken out and can be on her back for 15 minutes at a time throughout the day. She is doing so good. She continues to eat well and is gaining weight. Her breathing is still fluctuating, so they have increased her oxygen. They started her on caffeine a couple days ago hoping that it would help with the breathing but it hasn't. She is starting to open her eyes more and cries when she doesn't like something. I have asked a few times now when she might be able to come home. Theres no real answer. I do know she needs to be taking all her feedings either through nursing or bottle and her breathing needs to get better.