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.

No more surgery's for now

Today has been a busy day. We went to U of M at 10:30am to get my staples out. On our way we got a call from the doctor asking permission to give general anesthetic for the MRI. We though the MRI was going to be done last night, but it didn't, so today it happened.  We got to the hospital and met a young girl who works there who also has spina bifida. We talked with her for about 2 hours, she was an inspiration We weren't able to see Avery since she wasn't back from her MRI yet. So we went home. I got a phone call from the Doctor at about 4pm. She said that Avery was back from her MRI.  and doctors  were able to compare the MRI from Philadelphia Childrens Hospital to the one they did today. They said as of now she will not need any more surgeries. The best news I have heard all day. Praise God!!!!!  They are taking her off the ventilator and allowing her to eat, hopefully in a day or two I will begin to start nursing her again, can't wait. I asked about her back, since it looks pretty bad, they said that the dark areas will slough off and new skin will grow underneath. The physical therapist has been working on her foot 3 times a day and has almost got it straight, amazing what a little stretching and massaging will do. All the kids are home from school, we have eaten dinner, now we are all on our way to see little Avery.  Thank you for the prayers that touch our little girl.

I am really sad today!

I knew today would come, I am having such a hard time having to leave
Avery at the hospital, its just not natural. In need of lots of prayers today.

Thank you

Wanted to thank everyone for all your prayers, Avery is doing so well and I know its because she is surrounded by people who are raising her up. We are so blessed to be surrounded by people who love us. Thank you

                                                     

She is still pretty swollen in her face from surgery.

Avery is doing well, she is still on oxygen, but a very low setting. I was told today that they will keep her on the oxygen for a few more days to keep her comfortable and then start weaning her off. They started doing shock treatments this morning to see if her muscles would twitch. By this afternoon she was moving, that was a good sign. She is on a lot of pain medication, so she is sleeping all the time. Her incision on her back looks a bit worse than yesterday, but the doctor warned us that it would. In the picture of her back you can see blue ink, those areas were marked to be cut but they didn't need to. I was discharged today and am staying in a nesting room. I will stay as long as I am able. Jeremy is juggling the kids, school and sports while I'm away, he seems so tired when I talk to him but he's doing a great job. The physical therapist came in and showed me a few more stretching and massaging techniques for Averys little foot.

Avery is out of Surgery

                                                       Avery after surgery

Avery's back after surgery

Well, Avery just made it out of surgery and is doing very well. Surgery took about 4 and 1/2 hours.The plastic surgeon had a tough time closing up her back since she didn't have a lot of skin to work with. The neurosurgeon said that on the ultrasound that was taken after she was born was showing pockets of fluid or something in the thoracic area of her spine. They are going to get the MRI that was done in Philadelphia to see if there are any changes. Dr. Garton (surgeon) also is concerned with the chiari malformation, which is at the base of the cerebellum and is pulling on her spine. Still a lot of things to look at, but we are one step ahead. They also told us Avery will have to be on her tummy for 3 weeks. She will be able to come home before then, but will have to stay on her tummy. They have a special carseat that is more like a car bed that she will ride in. As soon as I'm able to see her I will post some pictures. It should be anytime.

Surgery to fix her back

The pediatric neurosurgeon Dr. Garton made it back from Denver today to cover Avery's back. This was our first time meeting him, but he seems very nice. They took her down at 2:30pm. He said the surgery will take about 4 hours. He will do his part and then the plastic surgeons will do theirs. He did mention that Avery doesn't have a lot of extra skin or tissue where the opening is so the plastic surgeons will have there work cut out for them today. Please keep praying!

More good news!

After 2 hours of sleep last night and only being able to see my baby girl before bed, I was up ready to go this morning. We went down to the NICU at 10:30am and I was able to hold Avery, such a joy. We were told that an ultrasound was done on Averys back and head to see about the hydrocephalus and her spine. They let me start nursing right away since they were unsure when her surgery would be, I have nursed every two hours all day long, in between seeing the anestisiologist, plastic surgeons, and neurologists. Busy day not a lot of time to rest, boy has it caught up to me.  The last few nursing sessions have been difficult, because of Averys open wound on her back, as the day progressed her back became more sensitive due to trying to nurse her. So her last feeding which was 10pm, I gave her a bottle so I wouldn't have to move her, she seemed much happier. All the pediatric neurologists are in Denver at a conference, one is flying home tonight and the surgery is scheduled for 2pm tomorrow. They said the surgery will take about 3-4 hours. Avery will then have to remain on her tummy for approx. 3 days. Still no signs of hydrocephalus, but that can change after the surgery. Otherwise she is doing so well, she coos a lot, as if telling you her life story. We also met with the physical therapist today and he has shown us how to do some stretching and massaging on Averys clubbed foot. Well off to bed, I am exhausted. More to come tomorrow.   

She Is Here!!!!!!!!!

Enjoying Sunday afternoon with my family, we went to church and then to pizza after, which has become our  Sunday tradition.  The weather was spectacular 70 degrees, we came home, the kids immediately put on their swim suits and got the slip n slide out. At 4:30pm my water broke, what a whirl wind. We got to the hospital at 6:30pm. They took me in and said that a C-section would be happening now. They had an emergency c-section that needed to be taken before me, so I waited. I was finally taken back at 11:40pm and little Avery was born at 12:27am on 4/11/11. She weighed 4 lbs 13 oz and is 16 3/4 inches long. She is breathing on her own and doing very well. I didn't get to see her until 4:30am, when I was taken out of recovery and brought to my room. They took me in the nursery on a bed and let me hold her for about 10 minutes. What a dream, she is perfect and so beautiful.

It is now 9:30am and doctors are doing a ultrasound on her head to see about the hydrocephalus and on her back to see what kind of damage there is to her back.  We are waiting to hear if she will have surgery today on her back. I can't thank you all enough for your prayers, she is a miracle and we are blessed.

Good News

Today we had another Dr. Appt. It went well and we got some good news. Averys venticles have gone down and are now at 13mm, she is measuring on time and weighs approx. 4lbs 11oz. That is a whole pound in 2 weeks, amazing! We got a pretty good view of her back and it looks like the opening is down in the sacral area. This is good because the lower the better. We are set to be induced on May 10th in the evening, thats if little Avery doesn't pick her own date. Which if I had to guess she is going to come when we least expect it.

Baby Shower

Bailey Boo my niece

Shelley my best friend

Madi my daughter playing one of the games

Madi again, such a beautiful smile!

Cousin Amy, drove all the way from Chicago to be with me on this special day!

Everyone was given a quare of material to write a message to Avery, I will put a blanket together for her with all the squares.

My daughter Madi and I

The four amazing women that made this day possible, from left,Amber, me, Barb (Ambers mom), Shelley, and Rita(my mother in-law)

I found these online and decided to give them a try, with the help from my friend Shelley, they turned out great.

This is a diaper cake that Barb made me. These are diapers and onsies rolled up with ruffled socks at the top that look like flowers.

After I finally got everything put away, Averys little corner is ready for her.

This little bear was passed around at the shower, everyone said a prayer and gave it kiss. This will be Avery's first Teddy Bear!

Yesterday was fantastic, we had our baby shower. With the help of four fantastic women, it turned out wonderful. Today I organized everything put stuff away and set up the bassinet in our bedroom to get ready for little Avery. I really feel like she is going to be here soon, and I will be ready for her.