Day 16

So this past weekend was a little trying...miss Gianna wasn't handling her weans very well and was experiencing withdrawals. She cried the majority of Friday. Dan surprised us both and only had to work a half a day and walked in unexpectedly at noon. Definitely put a smile on my face! She was extremely fussy and finally around 4:30pm she fell asleep and we took that as an opportunity to go out for a bit. I felt rather guilty leaving her knowing that if she woke up she'd be fussy, but I think we both needed a break! Being in four walls all day can really make you feel stir crazy! A little fresh air did us both good! We took the T over to government center and walked down to The Black Rose for a drink. We hadn't had anything to eat for quite awhile and seeing as how it was Friday and we don't eat meat on Friday's we really couldn't order food off of their very Irish menu. So needless to say after 12oz of my Harp UFO beer on an empty stomach I was feeling verrrrrrry relaxed and happy! We were both hungry so we decided to head over to the North End for some pizza. (I had to leave 8oz of my yummy beer behind because if I finished it Dan would have been carrying me out!) We were worried about our muffin and I was feeling particularly guilty about being out so I decided to call our nurse to see how she was doing. The nurse said she woke up and was fussy and then had a bowel movement...the first one in 12days! She said she felt sooo much better and went back to sleep and told us to please stay out because Gianna was sleeping and happy. That made my night knowing that Gianna was happy and sleeping and had pooped!

So after dinner we walked over to Mike's Pastry and got some yummy desserts and brought them over to Long Wharf and ate them as we watched the sun set. It was such an enjoyable evening and we definitely needed some time away from the hospital and time with each other. We headed back to the hospital and stayed with her for a little bit before heading back to Yawkey for the night.

Sat was a whooooole different story. She cried for 99% of the day. I thought we were going to loose our minds! I felt so bad for the poor thing who obviously was upset or uncomfortable. It was so horrible not being able to console her or do anything for her! Being her parents you feel like super heros who naturally make everything better and to not be able to do that for her was such a helpless feeling! That night they finally determined that she was withdrawing and not handling her wean off of her sedation medication well and they finally went back up on it. After a little while she calmed down and her nurse had only her for a patient that night and assured us that she would hold her all night if that's what kept her happy. So after a very long and upsetting day we left the hospital. That was a bad day and night period lol.

Sunday was a much better day and she was a lot calmer. Nana and Bumpa surprised us after church and showed up to watch her for a bit so Dan and I could go out for a walk. That was very nice! We had a nice lunch with them and came up to visit muffin for a little bit before going out for a walk. Thank you nana and bumpa!

Yesterday was a really good day and she was so happy and smiley! I went down to the center for families and picked out some new books for her to read. I also picked up The Lion the Witch and the Wadrobe after Jess made a comment on her blog about reading that with Lily I thought that it was a great idea! She loves hearing me read and most of the time it puts her to sleep! So we read, played with some of her toys, she watched her show and took a three hour nap!

Dan and I have been going down to the chapel every night before we leave the hospital and we pray our rosary down there. We found out from Fr. Bob that the blessed sacrament is down there in this little box in the wall with a sanctuary light on top of it. It's nice for us to end our day in prayer together in front of Our Lord.

Dr. Buchmiller came in this am to take a look at the omphalocele. She was so shocked at how much had gone in over the weekend. She thinks it's making great progress. We're wrapping it a little differently right now and working on weaning her off her medication. We've taken her completely off her sedative and have replaced it with Ativan, which is given directly through her IV. The morphine is slowly being weaned off since she didn't tolerate it very well over the weekend. So the plan is to get her off her meds, get her up to the floor, and continue to do reduction and compression to get it truly at skin level. At that point we will reasess. Dr. Buchmiller

She's eat more now. She's taken 2oz for me around 10am and I tried to feed her around 1:30pm and she threw it up. It was actually kind of scary. I put the bottle down and she started to look like she was going to throw up so I sat her up. She then froze like she didn't know what to do with it and started to turn blue. I had to yell out for someone to come in. This doctor came walking in and she then proceeded to throw everything up. We gave her a little o2 and she was fine after that. Not sure if it was withdrawl symptoms, her tummy is tighter now or she choked a little...too many little things going on right now. lol

Gianna was in such a good mood yesterday am when I called at 8am and she was napping the nurse told me not to rush in and to take the morning off and take a break. I had to go to the grocery store anyways so I took a nice brisk walk down into Brookline to the Stop and Shop to pick up some of our groceries. My little cart kept accumulating things until it dawned on me that I would be lugging all of this home. Needless to say I was very particular about what I put in the cart. On my way home I decided to go a different way that I've walked before a couple of times and is a lot more scenic. Weeeellll I did in fact end up taking the "scenic" route because I got a little lost. Well not lost lost but didn't end up going the way I had intended to lol. I ended up heading the right way but then ended right back to where I had started....oops. For all of you who I know are reading this worried about my safety and getting lost by myself in Boston....it's million dollar neighborhoods and I can't even tell you how many people are walking the side walks in the morning so I feel really safe walking around this area. Plus all the nurses have told me this is a great area to walk around.

I was able to take a little walk at lunch today and ate my lunch out in the Prouty Garden. Eleanor Prouty set up a trust fund to keep the garden as long as Children's Hospital is in existence. She protected it so much legally that no one will ever be allowed to build on it or remove it or move it. It has enough money in the trust fund to have two full time gardeners until like I said CHB is no longer in existence. It's always soooo beautiful and it's so delightful to go out there when I get the chance. I can't wait until Gianna can go out there with me! :)

She's been sleeping good at night too! Most of the nights she sleeps straight through they've told me! Keep it up G! She's also been taking her am and pm naps, which she is currently doing. :) I have her Jewel Lullaby cd playing and most everyone who comes in here says "It's so peaceful in here!" I like to keep some sort of music playing as I feel it makes her comfortable. I also went to CVS and picked up the JJ Bedtime lotion that she wears at home. She smells so good! The lotion they give you here doesn't have any smell to it and is so watery...she smells like my lil muff muff now. :)

So we're doing really well trying to take every day as it comes. We had a little bit of a rough weekend, but just trying to make sure we take care of ourselves as much as we're taking care of her. I have to remind myself that the nurses and doctors aren't thinking I'm a bad mom for taking some time out of the day to get out and get some fresh air or taking some time for Dan and I to both get out together. They encourage us to get out actually. I can see why they say that the divorce rate is so high for parents with children who have long stays at the hospital....not that Dan and I are having any issues, but that's because we're making sure we make time for eachother keep open communication and keep reminding ourselves that if we don't keep us strong we can't keep her strong. We're a team. We each handle things so differently and have to constantly remind ourselves that just because we each have a different approach to dealing with the stress of this all it doesn't make his way or my way bad, but we have to be respectful and understanding of eachother's way of dealing with things. This time around has been so different and so much more stressful for us. I really haven't been handling things that great and its a constant game of figuring out how to handle things...what's going to make this work. Each day gets a little easier. For anyone reading this that may be going through the same thing or may be going through this in the near future, just know that there are other people out there going through similar situations that you're a good parent and that it's ok to not be physically present at the hospital 24/7. I wish I knew some other parents going through this right now and I wish they'd tell me the same thing lol. The guilt is the worst part of this whole thing!

I hope you're all doing well! Will keep you updated!

It's actually much smaller then this...this was probably last Friday...it's much closer to the skin now.

first time i got to hold her

first time daddy gets to hold her

i got my eyes on you!

this is the life!

Love and prayers to all!

Dan, Kaite and Gianna