Big Sister

                                                                            SISTERS!

                                                                   Stretching

                                                                        So Sleepy!!!!!!!!

Today Madi came with me to the hospital, this was the first time she got to hold her baby sister. Wow its hard to believe there is 13 years between the two of them. Doctors came by today and said Avery is doing well. May 3rd she will be able to go on her back and will have her catheter taken out. She is still having some shallow breathing and they believe its due to the chiari. They see this a lot in children that have SB. Today I wanted to ask, "when will she come home?", but I didn't. I don't want them to give me a date and then have her not come home.

Feisty Girl

                                The tape on her nose is to hold the O2 tube in place otherwise she like to eat it

                                          This is her clubbed foot. This is where they thought she was developing cellulitis

 

This was caused from the little brace they put on that was too tight.

Avery is starting to show some personality, which is quite nice. Today she has nursed both of her feedings completely without being bottle fed or tubed. She is showing more strength and starting to act like a newborn. She gets upset when I put her down, which makes me feel good. Thats how I know she is getting better. She is still having very shallow breathing and they have her on 25% O2, which is a very small amount. I've asked the doctors what might be causing this and they said it could be a number of things, prematurity, hydrocephalus, infection. I think as the days go on, its looking more like the hydrocephalus is causing the shallow breathing. She has been on antibiotics for 7 days for infection and  is now considered full term, not premature.

Day 12

I arrived today at 9:30am so I could be here for Avery's 10am feeding, the last couple days I have been staying most of the day, so I can nurse her at each feeding which is every 3 hours. She is doing quite well. Its funny how each nurse that we have has had there own way of doing things, some are very proactive with kangaroo care and nursing and others are not. I have to put my foot down sometimes.

                                                         her back is looking so good

                                                                Snoozing after her feeding

Avery has has a little set back. On her foot that is clubbed, they have been massaging it and stretching it. Physical therapy is in everyday to see how its doing, well it was doing so good they thought they would put a brace on it to help keep it straight, it was only on one day. Yesterday when I came in Avery had another IV put in and was given antibiotics because the brace was rubbing and caused a open sore as well as cellulitis. They are keeping a close eye on it now. She is also desating, which means that there is a decrease in the percentage of oxygen found in the circulationg blood supply.  She has been having desats all along, but they got really low last night, which makes me think it could be an infection, especially with how her foot looks. I will ask the doctor as soon as they make their rounds today.

All pretty in her pink hat

                        Avery's name tag, Madi helped me put this together with her scrapbooking stuff.

                                                                        Sleepy Girl

                                                                Look at my new pink hat

                                                                Her back looks so good

                                                                 I love my paci

Avery is doing so well, She got her IV taken out of her head, the bandage on her back was taken off, and her drain tube was pulled out, too.  She only has her feeding tube and catheter. They have told us that we can't hold her again, because they don't want her back to be under any stress. Her back looks really good and they have hopes that the skin will make it. So she continues to remain on her tummy, she is finally taking a bottle and is taking 12cc at a time, she needs to get up to 33cc at each feeding with a bottle. She is moving her toes on both feet, how  fantastic. She is so strong and such a trooper.

Finally got to hold my girl

Today I was on a mission. I was at the hospital by 8:30am to catch all the doctors when they made their rounds. I had a list of questions. I was able to speak with urology, neurology, plastic surgeon, and physical therapy, plus I was able to hold my little girl again. I was fulfilled. From urology I found out that Avery's urine is backing up into her kidneys, so she will be put on an antibiotic to see if it helps. From the neurologist I found out that Avery will most likely need a shunt put in for the hydrocephalus. The hydrocephalus isn't that bad right now, but everyday there is a little more swelling in her ventricles. She also has a Chiari malformation which is when part of the cerebellum is located below the foramen magnum.This can cause gagging and choking when she eats as well as trouble breathing, so far she is not showing signs of this, but the chiari can be seen on the MRI. When I saw the plastic surgeon I wanted to know about Avery's back. He told me that the dark skin on Avery's back will probably not make it. It will scab and peel off and new skin will grow. We will have to keep it bandaged for awhile and she has to remain on her tummy for 3 weeks. No pressure can be put on her back, after 3 weeks we will be able to put her on her back for like 15 minutes at a time throughout the day. The time on her back will increase after that. The one question that I have been wondering is when can I bring my baby home. Well, she is a preemie, so she has a few things that she needs to accomplish before she comes home. She needs to be eating on her own, right now she is being tubed fed and I can start nursing part of the time if she has enough energy. The other is weight gain.

No more ventilator

                                                  Daddy holding her head up

                                 She is able to be on her back 30minutes at a time throughout the day

                                                             Holding mommy's finger

                                     Still a bit swollen in the face, can't hardly open her eyes yet.



Tody we went and saw little miss Avery, she is off her ventilator and doing well they will start to feed her tonight and hopefully we will get to hold her tomorrow.  Can't wait to feel her little heartbeat next to mine.

Avery's back before Surgery

This is a picture of Averys back right after she was born, as you can see the area is pretty big. Which is why they had to overlap skin to cover it.