Happy Birthday Ava !

It's been a long year with this little one, but we can't imagine a sweeter baby. Ava has really been through it, but teaches us so much about resilience and pure love. She is fairly quiet but constantly studying people and I know she picks up on more than we realize most of the time. She is always ready for a good joke and makes it very rewarding to joke with her because of the laughs and head shakes you get in return. She loves books! You think she wouldn't care if you read her the same books over and over, but she is always ready for a new book! She gets the idea after a while and is ready to move on! Especially Eric Carle. She has a beautiful way of moving her hands. She likes to make them dance, even with a wave. Music really calms her, there is such a light in her eyes when she hears a good song. She loves stuffed animals that are very large. She likes to pick them up and carry them around even though they are the same size as her or bigger. She is very patient. Sometimes it takes us a long time to get everything ready for a feeding, and most of the time she just sits there calmly, just waiting. She really connects to you when you look at her. She stares right into your soul. Sometimes I don't know what to make of Ava; she can be a mystery. There is so much more to her than what I understand and I am excited to get to know her more. I never get tired of Ava even though I get tired from all that I have to do for her. Morgan calls her his littlle doll, and she really is. You have to meet her and spend some time with her and then you will know and see just how great she is!

Morgan made a delicious white cake with cream cheese frosting and I decorated it. Ava is still not aloud to put her hands in her mouth, but we let her play in the cake, and she loved it! I gave her a little ice cream on the tip of her tongue and she seemed to really enjoy it. We had a party with Grandma and Grandpa Smith, Natalie and her cute kids, Allison and sweet carriemarie, Susan, and us. Ava was a little shy of all the people, but enjoyed herself when cake time came around. 

I made Ava a black apple doll for her birthday. I got the idea from Rachelle a long time ago and always wanted to make one. I like how she turned out, and Ava really liked her too!

Grandma Smith bought some balloons for the party, and Ava had never seen balloons before. She was entertained for quite some time playing with the string. 

Ava had a great birthday! Thanks to all who came to her party and put so much into it to make it special. Thank you to those who could not be here, but would if you could, and all your love and thoughtfulness!

Feeling Better

No smiles quite yet, but we got pretty close. Ava started reaching for her feet again, so I think things are looking up. She has to wear arm bands called no-no's. They prevent her from bending her arms to put her hands or any objects in her mouth. She doesn't seem to mind them too much now, but she is supposed to wear these for 3-4 weeks! Oh my. What is to become of us? One day Ava will be free. My mom hung out with me in the hospital room all day while Morgan went home for a much deserved rest. Things went well, but Johns Hopkins facilities are so cramped! We are stuck in a small space with 4 other babies who scream and cry at random and wake my poor baby up. I'm not crazy about this hospital right now, though the surgeon who operated on her is very respected and experienced so it makes it all worth it. Here are some pictures of her right after the surgery last night. You can see how much better she is doing now.

Totally exhausted and traumatized but so beautiful

 

Cleft Palate Repair

This will be a short update since it is so late, but everything went well today. Ava's mouth is very sore right now and the bleeding hasn't stopped yet. She was coughing up a lot of blood earlier and it scared us a little, but she is stable now. Johns Hopkins only allows one parent in the PICU at night, so Morgan is there with her now. I am so grateful to him because the first night after surgery is the worst, and sometimes it is more than I can bear; especially being alone with nurses that aren't very attentive. We are so glad that things went smoothly, we love our little gal.

Update

This morning I woke up to this view in our backyard. So beautiful. It makes me feel like we live in a fairy-tale land. I tried to show Ava but she got distracted by a stuffed animal on the windowsill. I think she couldn't see that far away. How many deer do you see?

Ava has been quite flexible lately. I think she is experimenting with what she can do while being stuck in one place all the time. Tomorrow will be the end of the official 6 week healing time since her surgery. Her muscles have been really weak and she hasn't shown an interest in crawling or standing against things. Her legs usually just collapse, but she has just started using the jumper again which might help her gain some strength back.

Tomorrow is the big day for her cleft palate repair. The surgery will be at 3:15 in the afternoon. We are excited for it,  but tired of putting Ava through yet another traumatic ordeal. This is her 6th surgery in her first year of life. Next week is her birthday and I hope she will be feeling much better. Ava you are amazing! We couldn't ask for a better baby.

Somewhere In Between

Ava has been eating a lot more by mouth since her surgery!

So here we are. Trying to find the balance in things. Trying to make sense of what has happened and what still needs to happen and everything in between. Since day one of Ava's life we have been told by doctor after doctor to be careful with germs. At the beginning we were under strict orders not to expose Ava to anything for the first 3 months. Then, our ENT said to wait through the whole winter and not leave the house unless necessary. Spring came, but all of the issues with her spine and lungs crept up and the Pulmonologist and Orthopedic Specialists said to be just as careful. We thought after this last surgery, that we could loosen up more, but we spoke to 3 different pulmonologists and the message was still pretty clear; don't relax quite yet. But when? We don't know. Her lungs are still small. A lot of it is common sense but still hard; wash your hands before you touch her, don't let sick people near her, if you go anywhere public don't let people come closer than 3 feet. I really don't think they realize how hard this is. You have to treat people like they have the plague. You feel paranoid all the time and can't relax in public. You can't let Ava touch germy things; pretty much you can't really live life. Thats how it has been for 11 months now. AHHH! We have decided we need to find our own way to live and still be responsible "good" parents. It's difficult but we have attempted a few brief outings in the last week and it felt good. We especially need to keep her well for her upcoming surgery in 3 weeks. Ava is doing so much better now though. She seems a lot happier! I can't wait until we don't have to worry if she gets sick. What a liberating day.