Ice cream at midnight...

is a little habit that we finally broke for little miss! Instead of getting her yummy bottle (not actually icecream) at 2am, Maddie's finally sleeping through the night! It took almost 21 months for this to happen but as soon as she was weaned from her bottle and I quit getting up with her with every peep she made, she did it! I have hesitated to post about this since I had some doubts it would be a success but we're going on two weeks, so I'm crossing my fingers this is our new norm. Maddie still sleeps 6 steps from our bed in her crib in the little nursery nook (due to lack of bedrooms in our home) so I thought it would be nearly impossible for her. Naps are still a hurdle, the girl hates to sleep in a room by herself and throws some major fits. Boy is it going to be a rude awakening when she has her own room someday soon and loses her two favorite roomies, mom and dad!

I was procrastinating on weaning her from her bottle since it was "drilled" into me from day 1 how important it was for her to have enough calories and keeping her hydrated is critical with her anatomy. For her first 6 months of life or so, I forced her to eat and worked so hard to get her to the point of wanting to take her bottle. She went from an NG tube, to bottle feeding only an ounce at a time 24/7, and I kept a record of every ounce she ate until she was 10 months old! Yes, I've made some progress. But by about 8 months old, she started liking her bottles and we finally were having success. She was gaining well and enjoyed eating, her reflux was minimal and feeding her wasn't a battle like it had been. As weird as it sounds, I've actually loved getting up with her every night, it was our cuddle, quiet, alone time together and I felt reassured with getting a few more ounces in her this way. I was also convinced she was a better eater while drowsy and it was my security blanket and hers.

BUT...at her 18 mo. visit, her pediatrician mentioned getting her weaned ASAP as well as no more "social hour with mom" in the middle of the night. The habits we were creating were going to be tougher to break as she got older. I wasn't convinced yet to start this until we had our visit with her cardiologist. Dr. Vernon reiterated that she does not need a bottle anymore, she can take a sippy just fine and the last thing she needs is to still be getting up through the night. So, after crying to Bryan after leaving the office visit, we made the decision to "tough love" her though the night, starting that night. Amazingly, she actually just fussed a bit then went back to sleep! Every night since, she's slept through the night without waking up. No puking or crying herself into hysterics (she's great at this and has learned that if she pukes, she gets out of her crib. I know, very spoiled.)

I guess Maddie was more ready for this than me! So no more ice cream at midnight for our little love and I actually feel more rested these days. It's amazing how well you feel after having a full night's sleep...it's a good thing for all of us!

Maddie and the rest of us are officially on the mend. She is doing so much better, off of the oxygen since Sunday (she kept ripping it off of her face and her cheeks were paying the price for it!) and she's been maintaining her sats in the mid-70's. The cough is really the only part hanging on still. She's eating much better...but according to the dietitian at Children's, she isn't getting enough and her weight has just plateaued at 9 kilos (right at 20 lbs.) for the last few months. Their recommendation is to stop her formula and start giving her 2-3 Pediasure bottles a day since it's 30 cals/oz. Maddie's only been taking about 15-18 oz. of formula a day plus whatever additional milk or juice she gets in her sippy cup and meals and snacks. I've been trying different Pediasure flavors, diluting it with whole milk, etc. and she's just not liking it. Any ideas on how to get her to take this are surely welcomed as well as any ideas for boosting those calories!!! I wasn't really worried about it until our over-nighter last week at the hospital...those dietician's always get me in a twit! Thanks :)



Enjoying her favorite...homemade mac-n-cheese smothered with butter and cheese!

Cardiology Check-up 1/21/09

Before leaving on vacation, Maddie had a visit to Children's Bellevue with Dr. Vernon. Yes, we got to see our original cardiologist again since her return from maternity leave! Meg's first remarks when seeing Miss Maddie were, "she's HUGE!" since she hadn't seen her in person for 7 months (only in pictures). Maddie has figured out what's up now and started crying the minute we began the appt. She is, in fact, HUGE, weighing in at 8.20 kilos=18.0 lbs!!! WOW! The 28 cal is doing the job plus her new LOVE of feeding herself since she's topping off at around 20 oz a day with her bottles. This puts her in the 18th percentile for weight. Her height is 28.15 inches, 25th percentile. So we were super excited about her growth. She also had an EKG, an echo, and sats were 81%. Maddie has leveled out in the low 80's since her Glenn. We ended up getting a good echo with the help of Maddie lying on mommy's chest/lap with a sucker in hand!!! Hey, whatever works to get a good look at that heart of hers! She devoured it and we were able to get a thorough echo done :) Everything looks about the same, her P.A's are still small, the branch that was narrowing looked about the same and we learned of some new news that she has mild aortic valve regurgitation. The left side of her heart is dilated because it does all of the work so a little leaking is "normal" with her anatomy. We don't have to follow up for 4 months! That's good news in itself!

7 months!

These monthly birthday's sure come around fast...Maddie's growing up quickly and picking up momentum on reaching many milestones. I'm finding her sleeping on her tummy now when I get her out of her crib. Rolling has become a favorite new trick. She's sleeping a 6-7 hour stretch at night which has been SO NICE for me...finally, some sleep! We've gotten the OK to let her sleep now and wake up when she's hungry but most of the time, I still wake her. I sometimes wonder how long she'd really sleep if I didn't wake her up! The girl has a lack of appetite and enjoys her sleep. Wish I had that! She's so close to sitting up and loves standing with the help of holding onto hands. These are things I wasn't expecting for her until 9 or 10 months. She hasn't let that heart of her stop her! And I'm happy to say that now she officially enjoys her baby food. It took almost a month of convincing though... she's finally welcoming a bite rather than spitting it out or doing the tongue thrust. Here's some pictures of her at mealtime and her favorite thing to gum around, an arrowroot cookie. Teeth have got to be on the way!

We're here...early

Yes, Maddie's in the hospital. Yesterday after her refusal to eat, extreme sleepiness and her dusky look, I called her Cardiologist and the decision was made to get her over here. So Bryan and I drove over to Seattle to Children's ER. Her sats were 60 when we got here then hung in the upper 60's to low 70's. Maddie's color was very poor and she had a severe mood change- FUSSY! I've been lucky with my laid back baby girl, so this was a signal that things were not quite right. Over the last week she'd really tapered off of her eating and was having more low sat episodes. I'm thinking our last ER visit was the brink of what we're seeing now. So she's been fighting this off and on for 2 weeks.

Many tests were done last night (urine, blood, chest x-ray) that all came back fine. A culture was also grown to rule out any of the "5 bad viruses" and that also came back negative. She'd been sneezing and coughing but nothing has really manifested from it. Overall, little sis just doesn't feel well. So she's on 0.8 liters of oxygen with a nose cannula to help bring up her sats and that good ol' NG tube was put back for feeding after 6, yes 6, attempts (3 different nurses, even the "big dog") at getting an IV in her arms/legs failed to help get her hydrated. It was horrible to watch!!! I've never seen a baby cry harder and consoling did not work. We've now learned that Maddie has really crummy veins that blow every time they'd get the IV threaded in. We were admitted to the floor and the perk of our stay has been we're in isolation since she could be contagious with her teeny cough and sneezing. So we have our own room: G4001. I'm so happy about this part.

An echo has been scheduled for tomorrow morning and we are in the books for her cath on Tuesday morning. If she's not feeling well though, I don't think they'd do the cath. It could be a minor virus that's causing this or a heart problem. Hopefully the echo can show if it's heart related and the cath will be the best way to see what's going on. So we're playing the waiting game.

On another note, Maddie is 4 months old today! Not so fun spending her 4 mo. birthday in the hospital, poor baby. She's looking a little beat up too... She did gain pretty well, even with her sporadic feedings the last few days, she's up to 11 lbs. 10 oz. which 5 kilos is the minimum weight they like them for the Glenn and she's hit that. So if she has to have surgery sooner than we thought, I think she'll handle it fine. We just need to get her healthy and feeling good again. Keep our sweetie in your prayers. We'll keep you posted.

Better Days

Just an update that Maddie is feeling much better. These last couple of days have been good. Her sats are running normal for her again and she's making progress with her appetite each day. Her symptoms are hardly visible! She's been discovering lots of new sounds that she can make...so close to giggling as well (with the help of tickling her under her chin). It's so fun watching her new tricks!

Feeling Yucky

Maddie has officially caught the bug that her big brother Caden has had. I'm thinking its a viral thing: fatigue, coughing, hoarseness, stuffy head (no drainage yet)and sneezing. Cade has ran a fever with it but Maddie hasn't shown this symptom yet. This explains her past few days of ups and downs. After talking with the doctor and the cardiac nurse, Karen, over the last couple of days, they are not concerned with Maddie's heart. She's running pretty low sats (68-74), she's much duskier in color, so I've been putting the blow-by oxygen on her which has helped them come up and be more stable. They commented that if she doesn't get over this within a week then we may need to get her over there. She had no appetite yesterday, which was scary and she was completely out of it. Today she's eating much better and she even likes some Pedialyte in her bottle. The thickness of her bottles is probably not the tastiest right now so this helps that out. My mom, mother-in-law, and sister-in-law helped out and took the boys yesterday and overnight so I could get some much needed sleep (when it was possible!)

I do think I'm going a bit delirious... I seriously thought the pulse oximeter screen was talking to me last night. My nerves and anxiety are completely shot. It's so hard watching our children when they're sick and even more difficult when your little one is already taxed! I worry about her heart function enough as it is and since this is her first time getting sick, I'm just on-edge of what to look out for. We do know she's a fighter and should whip this in a couple of days. So please keep our little Maddie in your prayers to beat this "summer complaint" bug.

Change of Plans (for now!)

Our instructions this morning were to call Children's and report to the cardiologist of our game plan for coming over there. Miss Maddie "got wind" of having a hospital stay...guess what, her sats are back up to her baseline (77) and she looks and acts fine, since being home from the ER. She did lose her midnight bottle, but vigorously ate her 3 am great and has tapered off again this morning on her feed. But after talking to the doctor this morning, we agree that we can do the monitoring we need here at home vs. being admitted to Children's for now. I'm very on top of it (poor Maddie) and the plan is to go over and be admitted if she starts having/staying at low sats again. So Maddie continues to call the shots around here...she has since her surprise entrance into the world!

A Bump

Well, we had a bump today. This week I've been extra concerned about Maddie's low sats. Seeing her low scores at the clinic on Wednesday really confirmed my anxiety on this. Since being home, they've been low as well. So this morning I had her on the pulse oximeter and she couldn't get her sats above 72 and she was hanging in the high 60's. Our instructions have been that if she is running below 75, consistently, to call. So, I did. At this time, Maddie's lips are very purple, she looks more dusky than usual and her behavior had changed. She really wasn't interested in her prior 3 bottles and getting her to eat was a huge chore. Bryan's mom had also stopped by and noticed her "look" wasn't normal for Maddie. The cardiac nurse that I was talking to on the other line even commented that she sounded "weak". This episode of low sats went on for over an hour, so Dr. Seslar thought it was best to either drive right over to Seattle or go to the ER. I chose the later and drove to Wenatchee's ER. Children's was ready for an air transport if needed. Low and behold, our baby girl was still hanging low, although her color had improved by now. We spent 4 hours in the ER this afternoon, monitoring Maddie's sats, heart rate and respiratory rate while Children's in Seattle was getting updates on the other line, deciding what step we should take next. So the decision was finally made...we were discharged, with oxygen (blow-by), and we came home but only TEMPORARILY. We're heading back over first thing tomorrow to check-in at Children's in Seattle. Dr. Seslar believes she's really trending down and these are not just "minor" episodes of desaturations she's been having. They would be considered "minor" if they jumped right back up...not staying low for over an hour (which also happened in the ER today.) The team would like to watch her for a couple of days, monitoring her every "hiccup" and then possibly go into the cath lab next week for her cath procedure. The idea is that she may need her shunt ballooned opened more which would bring her sats up and buy us some more time before her surgery. So, Maddie and I will be leaving early in the morning and she'll be admitted to the floor. We'd rather be safe than sorry with her as would her entire cardiac team. She just needs to be monitored more and figure out what's going on with her and these episodes. I'm completely exhausted and have more to do tonight so I better cut this short. Wish us luck and please keep Miss Maddie in your prayers. We hope this is just a little bump for her. I'll keep everyone posted and hopefully they will be boring ones.

3.68 Kilos, What?

Maddie's appointment went really well yesterday. She weighed 3.68 kilos...that's 8 lbs. 1 oz. with the conversion, a 1 lb. 5 oz. gain in exactly 3 weeks, 21 ounces in 20 days! Children's does everything in the metric system so we're always a little confused when hearing her numbers since we have to convert it. It becomes quite the math war between Bryan and I. We're very happy with this weight then Bryan says, "this is what she probably would have weighed at birth if she had been full-term." Oh well, 8 weeks later she's 8 pounds. The best part is, she's gaining! She's a feeder and a grower, just like we want her to be. No echo was done, just an EKG. Her SATS are hanging around 80, so no change there either. Her feeds are good, volume keeps increasing weekly, she's staying at 24 cal (fortified breastmilk) and eating every 3 hours and also on demand. As for the ride over, we're working on it...the binky usually took care of her "outbursts". We talked a lot to Dr. Vernon about what possible outcomes her heart disease could bring for her future- which is nice to know what "could/could not" happen but can also be very scary. I'm still naive enough to think that when we go to the appointment, the doctors are going to give me a miracle diagnosis of Maddie's heart. I've been taking this one day at a time and yesterday decided to "go there" and found myself in tears last night. It's difficult to accept that she'll never have a normal heart or be cured of her defect...our bodies are just not meant to pump with only 1 side of the heart functioning. Sometimes it's hard to imagine that anything is wrong with her, she's just been doing so well. So I have to hold onto the good and enjoy every day because with all things in life, change happens. We go back for our next visit in 2 weeks. I think I'll hold off on asking so many questions next time.

(Heather (Daniel's mom)- if you read this, would you email or call me? I'd love to get in touch with you and see how Maddie's little ICU roomie is doing! 509-346-2821)