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!

2 days till Turkey Day!

Miss Haley-bug had a good night last night and a good day today. She was awake today from 9:30 am till 6:30 pm with only one 20 minute nap (which I tricked her into taking by popping her in the Baby Bjorn so I could do laundry and burn boxes)! She had a lot of contented independent play time this morning, happily playing with elephant and her bears in the pack n' play. Grandpa had lunch with us and we always enjoy his company. Really it's been a pretty uneventful day - which we like! We're looking forward to Thanksgiving and hopefully everyone will stay healthy between now and then so we can go!

Here's another video of her playing with elephant. Nothing new but I love videos - especially for the far away family!

Happy Birthday Grandma Wisconsin!

Happy Birthday Grandma Wisconsin - wish we were closer so we could celebrate with you! Hazelnut would love to give you some birthday snuggles! xoxo

A 99% good report at the doctor's office today! Haley's Echo, EKG, saturations, and blood work looked great! Wonderfully her kidney value (creatinine) was back down within normal limits! I was so thrilled! :) The doctor said her heart function, bands, and stent all looked great.

The 1% worry in my opinion is that the speed at which the blood flows through the hole they created between the top two chambers in her heart is slightly increased. When she left the hospital it was ~2, at the 2nd recheck it was ~3, at the 3rd recheck it was ~3.5, and today it was up to 4.7. If the speed gets too high, it means that the hole is getting too small and they may have to do another catheter procedure to enlarge the hole. Dr. Wheller says we shouldn't worry about it and that it's not concerning until it reaches 7. Hopefully it will not continue to increase! Or if it does persist in increasing, hopefully it does it slowly enough that they can just enlarge the hole when they do the second hybrid procedure anyway. It just makes me nervous since it jumped up so much since last time, but I will try to listen to what Dr. Wheller tells me and try not to worry (to much).

Happily they were content with how much she's been eating since she's been gaining so well! They were amazed at how much weight she's been gaining considering how few calories she's been taking in - but they said it's wonderful and to keep doing what we're doing! :) Our little Haley-bug obviously knows how much she needs! The nurse we had today we hadn't seen in 4 weeks and she said it was amazing how much she'd grown - that she didn't even look like a heart baby! Yay!

It's always a bit of a traumatic day for Bug when we go up there, so we've been having some quality snuggly time this evening to try to make up for it. Here are some pictures of her cuddling with Daddy on the couch. :)

What a proud papa!

Finally!

Finally - a big smile caught on camera! Grandma and Haley-bug were having so much fun playing this morning that Haley was extra smiley, and Grandma saw her chance to capture a BIG toothless grin! Here it is. :)

Today was a busy day. Daddy, John, Katy, & Greg packed up our house in Columbus and loaded it in a U-Haul, then Daddy, John, Holly, Grandpa, and myself moved everything into our Logan house. Grandma babysat Haley-bug while I was helping over here in the afternoon/evening and then delivered her later in the day. We are very lucky to have such good friends and family - we would never have gotten all this done without them! Needless to say, our house is now overflowing with boxes, boxes, and too much furniture from two houses. It'll be awhile before we manage to sort through all of it and figure out which furniture goes and which stays. Luckily we have a long weekend coming up next weekend to hopefully make some progress! I'm anxious to sleep in our real bed for the first time in a long time tonight.

Tomorrow Haley, Great-Grandmom Stevelt, and I will be heading up to Children's for another recheck appointment. We are hoping and praying for good news/test results as always. Haley is still not eating very large volumes of food, but she is gaining like crazy! She's up to 10 lb 11 oz today - I think if she ate much more than she does she would become obese! She obviously gains very efficiently, a quality I'm sure she won't enjoy later in life. But hopefully since she is gaining so well they won't be concerned about her intake so much. She also has to have bloodwork repeated tomorrow because she had some kidney values that were mildly elevated when she left the hospital and at her first recheck appointment. Hopefully they will be down (or at least not increased) tomorrow. I'm always nervous and on edge the day before these appointments - I just pray everything will be okay and I also wish she didn't have to go through this. She is our little sweet pea and we love her so much.

Alright - one last cutie-pie picture to end this post!

A day at Grandma's!

Chad and I went Christmas shopping at Easton today and Haley had her first day of being babysat by Grandma all day! Grandma reported that she was a very good and happy baby all day long, so that's great. She must've been really good because now Grandma has even volunteered to get up with her all night tonight and let us sleep all night - what a nice Grandma! So we'd better scurry off to bed and enjoy these precious hours of uninterrupted sleep. :)

Unfortunately since we were gone all day I didn't get any new pictures, but I'll post an old one I like on here anyway. This one is from October 23rd. Hope everyone's having a great weekend!

Love Bug

Last night was the first 'bad' night we'd had in awhile. After Haley's RSV shot yesterday she was pretty pooped and slept all day, so needless to say we were up late at night. Then she was still up pretty bright and early, and a little bit fussier than usual today. Probably all to be expected after a vaccination. In any case she seems to be doing better this evening and she has been up most of the day, so hopefully she will sleep well tonight. Tomorrow Chad and I are going to go Christmas shopping up at Easton and it would be nice to go well rested! I can't believe I don't have any Christmas presents yet, I'm normally done Christmas shopping months ago. This reminds me why I'm normally done so early, I don't like the last minute pressure! But it will be fun to go to the mall, I haven't done anything normal like that in ages. We'll see how long I can stand to be away from Haley-bug though, unfortunately it's impossible to get much shopping done with her along, not to mention she's not supposed to go to crowded public places. But it will be fun to shop for Christmas presents for her! :)

Another elusive baby smile - the tail end caught on camera! They all come out looking like smirks by the time I realize she's smiling and push the button!

Wearing my favorite outfit - our little Love Bug. Don't mind the fact that she appears to have no neck in this picture, it's an elusive creature these days - often hidden by chubby cheeks and extra rolls! Yay for a 10 lb 6 oz baby today!

Another day, another shot

Here's what Haley thinks of having to get another shot (a shot she will have to get monthly all flu season long to help prevent a nasty virus called Respiratory Syncytial Virus):

And here's what she thinks about snuggling by the woodburner and playing with her toys (this is the closest I could get to catching an elusive baby smile on camera):

Haley-bug also secretly likes white-boy-rap and enjoys dancing to it...

TGIW - because that means Friday is only 2 days away!

Okay, so this picture is from yesterday but it just makes me laugh so much that I couldn't resist posting it too. Talk about a 'deer in the headlights' look - looks like she's up to something ornery!

Haley's been having a very independent day today - fusses if I hold her too much and just wants to lay, stretch, kick, and play with her toys. Then when she gets tired of that, her swing seems to be the one thing that will calm her down. I guess they mean it when they say to snuggle your babies as much as you can in the beginning, because soon enough they won't want you too! Though tomorrow she'll probably be back to insisting I hold her constantly - and I love both types of days for different reasons!

It was rainy and dreary here today so we just stayed inside and enjoyed the woodburner. Grandpa came in for lunch, and Grandma came over after school and watched Haley so I could get a few things done. Now Chadmo is home and watching Haley-bug so I can go grocery shopping (Haley's not supposed to go to the grocery store). Haley loves Daddy snuggly time!

Hitting the rings

What a fun day! Recently Haley has started getting excited when she sits in her bouncy seat and really acts like she'd like to get ahold of the animals that hang over her head. Sometimes she'll even accidently hit them and then she gets REALLY excited! Today we were playing on the couch and I was dangling this stuffed elephant that has rings dangling from one of his legs over top of her. She was just looking and looking and finally she hit the rings! She did it about 10 times in a row and started to leave her hand there for longer periods of time. At last I realized I should try to catch a little on video (easier said than done when you're holding the toy and the camera!) - so here it is! Sorry it's so short, I took it with my digital camera so it has limited memory. Especially with all the other baby pictures we have on it, haha. She's been cooing a lot today too, so that's great. And now when we read books together she will really look at the pictures. Though her attention span is about one book long, then she's bored with reading! The more interactive she gets, the more fun she is! Though I have to admit she's wearing me out with these long days - she tends to be awake for 8-9 hours straight with only a few little cat naps. That's okay with me though, so long as she keeps sleeping well at night. :) Hope everyone's having a great Tuesday!

10 pound baby!

Haley had her 2 month check-up today (a little late, her doctor was on vacation) and she now weighs 10 lbs 0.5 oz and is 22 inches long! She's getting to be such a big girl! Also, last week the local MRDD had come to evaluate her for any developmental delays (the hospital told us some delays are to be expected in a baby that's been through what Haley's been through), and we just got the great news today that she scored normally on all evaluations! So that was wonderful, wonderful news and a huge relief to hear. Hopefully all keeps going as it has - gaining weight, growing, and developing normally!

Poor Bug is feeling pretty wiped after her vaccinations today, hopefully she will feel better soon and get back to her happy self. I told Chadmo that the next time she's due for boosters I'm going to make him take off work and take her - it's no fun to always have to be the person to take her to be tortured! It's terrible to have to see your baby in pain. But I just have to keep reminding myself that everything she's going through is so she can be healthy and happy in the long run. She's our Love Bug and I just wish I could go through all of these things for her.

Lazy Sunday

Above: An example of what it's like to take a nap in the Stevelt-Mitchell household. :) Yay for lazy Sundays!

Below: A sleepy Roo-bug loves her Daddy bunches! Boo on Daddy going back to work tomorrow.

Visiting with Grandpa Chuck, Grandma Bea, and Aunt Arielle

Can you spot the big toothless grin above? They're the best!

Another beautiful Ohio day - perfect for our visitors from Wisconsin. Grandpa Chuck, Grandma Bea, and Aunt Arielle arrived yesterday evening and finally got to meet Haley-bug! Arielle stayed the night with us, and luckily for her Haley was a good baby again and only woke up at 3:00 am and then at 8:30 am to eat --> minimal crying to disturb Arielle's beauty sleep! Now today we've all just been hanging out, relaxing, and everyone except Haley and I went for a tour of Hocking County.

While they were out, Haley, the dogs, and I went for another walk - I truly wish this weather could last forever. Apparently a black bear sow and her two cubs were spotted a mile and a half from here yesterday, and I'm torn between the desire to see a bear and the fear that we might run into them! It's probably far more likely we'll never see them, but for now we're staying more out in the field and farther away from the woods.

Hope everyone is having a wonderful weekend! I can't believe it's less than 2 weeks till Thanksgiving - time flies!

Friday the 13th!

Happy Friday the 13th everyone! Watch a scary movie and pet a black cat to be festive! :)

It's a beautiful fall day in Ohio again today! We went for another fun walk up the hill with the dogs, who are getting so that whenever they see the Baby Bjorn come out that they get very excited! We didn't see any deer today and everyone was very well behaved. :)

After our walk we went and helped Grandpa in the clinic - Haley napped on the big chair while Mommy did a Fine Needle Aspirate of a mass on a dog's side (diagnosed a Cutaneous Mast Cell tumor - appears to be well differentiated which is good for the dog!), looked at the dog's eyes (it has chronic dry eyes) with Grandpa, and then watched Grandpa remove the mass. Then Haley decided it was time for lunch, so into the house we went. After lunch we were playing with Haley's favorite rattle, and she gave Mommy 3 huge grins in a row! That totally made Mommy's day!

Haley was a wonderful, wonderful baby and slept last night from ~12:30 am till 6:30 am this morning, and then from 7 am till 9:30 am! We really hope she can keep this up! She's eating a little better today, so hopefully she'll continue to do well throughout the evening and get her numbers up a little bit.

The weather is gorgeous here in Ohio today - bright, sunny, and crisply cold! Haley and I just couldn't stand to stay inside even if it was chilly, so we bundled ourselves up (see picture) for a walk up the hill with the dogs. We walked through the field behind our house, along the edge of the woods (to avoid the neighbors loose Saint Bernard who is less than friendly) and needless to say the dogs forayed into the woods. Lo and behold, here comes a 6-8 point buck tearing out of the woods with Ruby hot on his heels, Bianca trailing after, and Tucker really trailing behind. Despite my calls and whistles they were all off across a couple of fields, cows pastures, and into another set of woods. Thankfully the buck didn't run towards the road. They all came back soon enough, and they certainly enjoyed their run! I also got the opportunity to learn that it is really not possible to run after dogs when you have a baby strapped to your chest - lesson learned, perhaps its time to invest in a shock collar? It was certainly a fun sight since everyone is okay!

Last night was a good night - Haley slept from 12:15 pm till 6:30 am this morning! Then she ate, went right back to sleep, and slept till 10:00 am! It was fabulous, and I truly appreciated the sleep, but I have to admit the excitement was tainted by the fear that this is just another sign that her appetite is dropping off. She hasn't eaten very well today, hopefully she will pick it up this evening. Really her feeding started to drop off when we started adding formula, so maybe with breastmilk it tasted good enough she would keep eating whereas with formula once she's full she is done? (If you've never tasted formula, try it - it's like eating a chewed up aspirin!) Hopefully she will get used to the taste and start to eat better soon! I just wish breastfeeding would've worked out for us.

Grandpa Chuck, Grandma Beatriz, and Aunt Arielle are coming to meet Haley-bug this weekend and we are all looking forward to the visit! Haley always enjoys meeting new people and winning them over with her chubby cheeks, pretty blue eyes, and adorable yawns. We welcome any healthy visitors who would like to come and meet her! We can't wait for flu season to be over so we can take her out in public and to large groups and show her off!

Hello! I know I should've started this blog a long time ago when I was in the hospital like Derek and Emily did, instead of forcing millions of emails upon the masses, but we were pretty busy and we really just finally thought of a fun name for the blog and one can't start blogging without a fun blog name... In any case, here it is at long last!

We had another recheck with the doctors at Children's Hospital on Monday and received another good report! Haley's Echocardiogram, EKG, and saturations all look good and are actually improving, not just staying the same, so that's great! Unfortunately her feeds have not increased along with her weight gain so we are now having to mix her formula at a greater concentration so she can get the calories she needs even if she can't take in the normal volume. An inability to take in an adequate volume is 'normal' for heart babies, as they tell us eating is like running a marathon for these babies and they just tire out before they can take in enough. They've been impressed that she's done so well on her own to date, and we've been thrilled, so we just have to accept that this is the next step. The one benefit to this is it will hopefully let me stretch my breastmilk supply out for longer, as they want us to mix her bottles at 3/4 formula and 1/4 breastmilk. They think it would be better for her to get smaller amounts of breastmilk for as long as possible, and it will also make the taste transition easier on her. (Normally formula is mixed to 20 kcal/ounce, and Haley's will be mixed to 24 kcal/ounce.)

Haley's 2 month birthday was on Tuesday and she weighed in at a hefty 9 pounds 8 ounces! In the last week and a half or so she has really started to fill out and has lovely fat leg rolls and elbow dimples - it's great! Unfortunately she's also had some colicky episodes, but hopefully that's just the transition to adding in formula and will pass as she gets used to the change. The most exciting news is that about a week and a half ago she has started to give us some giant toothless grins which are the cutest things ever! We all act like fools all the time now trying to elicit these wonderful smiles. :)

Alright - that's all for now. Below is a picture of Miss Haley-bug from today, modeling a onesie that Greg-O made for her at her baby shower! :) If I don't post anything else, I will try to post a new picture of her every day (or two)!