Fuss, Fuss

Apologies for posting an older picture - it's a throw back from Haley's Saturday at Grandma's when they went for a little hike with Aunt Kelly & the dogs! I just think she's too cute all bundled up! :)

Well, Haley is still eating better today than she was over the weekend which is great! She's been quite the nibbly little fish today, eating lots of small meals frequently. I think that's due to the fact that she's been incredibly fussy today, more so than ever before. She cried/fussed for about 3-4 hours this morning, wanting to eat but only being able to eat a little bit before becoming so gassy that she would just fuss for an hour or so until she could eat a little more and then the cycle would repeat. Then she slept a lot of the early afternoon, and now this evening we're back to the same fussiness we had this morning. She keeps tooting and burping up a storm, but there seems to be a never ending supply of gas to make her fussy today! I feel so bad for the little snuggle Bug, you can just tell she's so uncomfortable and doesn't know what to do with herself. Unfortunately I think she inherited Daddy's big appetite and Mommy's finicky tummy (well, the appetite is good but the finickiness is not!) We'll hope she can sleep well tonight and have a better day tomorrow!

11 pound baby!

Today was a better day! Daddy headed off to Columbus where Katy K & Greg-O helped him paint one of the rooms in our house we're trying to sell. Bug and I stayed home and ate all day - almost every hour anyway! She also ate before going to sleep last night and woke up once (on her own) in the middle of the night to eat, so today we're already at 630 ml which makes me a very happy mama! I'm almost hesitant to write it on here for fear she won't keep it up, but I hope and pray that she does. Maybe she just needs to be home, undisturbed, and in her routine to eat well. If that's the case I guess we will be sitting around like lumps and not going anywhere for a long time, whatever it takes to keep her healthy. She does only seem to eat 50-80 ml in one whack usually, so it makes sense that she has to eat so frequently. Especially since she sleeps longer time periods at night than she used to. It was very exciting to weigh her today and have her finally weigh 11 pounds! Hopefully the home monitoring nurses will be happy too when they call to check in on her tomorrow. Alright, I'm knocking on wood that hopefully she will repeat today and keep eating better. Here are 2 more pictures - one of Haley-bug playing with Daddy and one of her lovely fat little arm rolls and beautiful sleeping face.

Stressed to the max

Obviously it's not Haley who is stressed to the max (see above picture) - which I am very thankful for!

I apologize in advance for complaining, and I am truly grateful and thankful every day and every second for my Haley-bug and for how well she is doing. But I am so stressed at the moment. So, so, so stressed. She's been eating less every day since the day before Thanksgiving, and today she ate less than she did the day after she came home! The quantity she ate today was also her minimum for hydration (16.33 oz/490 ml), something she's never done before. :( These last few days I feel like I spend all my time on the phone with the doctors/cardiologists because whether or not she gets her lasix doses depends on how much fluid she takes in. They can't just give me set numbers and I'm not allowed to decide to skip a dose on my own, so I always have to call and discuss it with them. Of course it's never the same doctor on-call so I always have to explain everything again and again. Then today the person on-call was some inept woman with a strong accent who wouldn't make a decision and just kept describing the signs of dehydration over and over and saying she couldn't be sure what to recommend! What's the use in talking to her? And it was impossible to escape the conversation! So finally I called my pediatrician who voiced my greatest fear that has been niggling at the back of my mind these last few days: "Have they talked to you yet about Naso-gastric tube feeding her?" Which no, they haven't, but she's eating significantly less than she was a week ago and also they won't send a baby home with an NG tube, only a G-tube. A G-tube is a tube placed into their stomach through their abdominal wall and would mean another surgery, something I vehemently hope and pray to avoid. Somehow just having someone finally mention this greatest fear of mine has completely undone me. Hopefully she will start to eat better now that we're home and can try to get back in our routine. And maybe if we don't let her sleep through the night, we can start trying to wake her up every 5-6 hours, then maybe she'll eat for us and her volumes will go back up. I know they can concentrate her formula more, but the last time they did that she decreased her volume because she didn't like it. Plus, she still has to take in yea-so-much liquid to keep hydrated, so I don't see how it would solve that problem. I don't know, I just don't know. Somehow this wasn't something I was ever prepared for. I always knew it would be a struggle to teach her to eat before we went home from the hospital, but I didn't realize it would be a struggle every day to get her to eat as much as she needs. Dr. Wheller said at one point that the first sign that something was going wrong was a decrease in feeds, so I can't help but feel this looming shadow hanging over me. She keeps gaining weight which is great and the one hope that I cling to. Today for the first time she had a significant decrease in wet diapers - she's only had 5 wet diapers today - so that has me scared too. But she acts happy and playful when she's awake, her color's good, her oxygenation levels are good, her capillary refill time is good, and her breathing seems normal. I just pray and pray we can get her feeds back up and that everything is okay. I know I should be thankful for how well we've been doing, and I truly am, but I can't help but ask for more by praying that she does better, eats more, and avoids another surgery.

I love her more than anything.

Sorry again to complain, but maybe by voicing this fear it will not come true just to make me look like a worry-wart. I hope that's all it is, that I'm just a worry-wart who needs some xanax, haha. ;)

Alright, I'm off to smooch my beautiful baby. Good night.

Home Again

Well Haley's first holiday went very well and was lots of fun! She traveled well to and from Wooster. We had a delicious Thanksgiving dinner at Jenny & Guy's house and she was a good girl and met lots of family members. She slept through the night for the first time ever on Thanksgiving night and then repeated the act last night! She saw her first snowflakes on Thanksgiving night, though not enough to stick on the ground. Unfortunately she has not been in the holiday spirit of gorging one's self and has in fact been eating less each day. :( She has gained weight every day though, so that's great. Right now we are waiting on her to eat her daily minimum so she can have her meds and hopefully we don't have to call the cardiologist. She is playing with Daddy on the couch and watching him eat an ice cream sandwich, so maybe that's making her hungry? She's been a sleepy-bug all day, so we'll see if we get any sleep tonight!

The dogs were thrilled to have us home, as were the cats. The house was rather freeze-y when we got here and we had to snuggle up and wait for the woodburner to warm up the house (see picture). It's nice and toasty now and we're all soaking up the heat, including all the pets who are fighting over the one bed on the hearth. It's good to be home!

Black Friday

Happy black friday everyone - hope you've been exercising your shopping muscles till your wallets burn! :) I woke up at 7:30 this morning - having slept solid since 11:30 pm - Haley's first night sleeping through the night!!! Then Daddy took over so I could go shopping and find lots of great deals, which I did, especially at the Ralph Lauren and Carter's outlet stores. It's fun to shop for clothes for the first time in almost a year - even if the sizes aren't quite what I'd like them to be yet...

Unfortunately Bug has had a fussy day and hasn't eaten very well so we didn't go out to Amish country to visit my friend Heidi and her family. We thought it was probably best to keep Haley home and quiet and feed her every time she showed an inkling. Hopefully she will have a big eating day tomorrow to make up for the past couple days...

Here's a family picture, something we don't have enough of as normally one of us is taking the pictures! Oh, and to correct an error on yesterday's post: Cameron is 1 month and 11 days younger than Haley!

Haley's first Thanksgiving!

We've had a wonderful Thanksgiving - the best one yet because our Haley-bug is here and celebrating with us! We hope you've all had a wonderful Turkey Day too, here are some pictures of Haley-bug to make it even better! ;) The first picture is of Great-Grandma Mimi with all her Great-Grandchildren. She's holding Haley and Cameron, Cameron was born 11 days after Haley. The second picture is of Aunt Kelly having a chat with Bug. :)

Thanksgiving Eve!

Here are some Haley-bug pictures from our photo-shoot today! One posing with Momo, one posing with Mommy (though she wouldn't be accommodating and look at the camera unless I was behind it), and one modeling the awesome new slippers Aunt Katy got for her! Hope everybody is having a fabulous short week and that you're all ready for Thanksgiving day. Wish we could celebrate with all of you - eat a piece of pumpkin pie and think of us!