new discovery

Picture this:
     It's three hours since Madi last ate and two hours since I went back to bed. Madi's fussing because she woke up ready to eat, now. She wants to alter the schedule, skip the diaper change and go straight to eating. I'm working as fast as I can to snap up the onesie again after some fresh britches. Madi's still grunting and groaning, ready to eat. It's time for her meds so I've gotta amuse/distract her for another minute or so. I'm humming and rocking her back and forth while measuring syringes, she's still fussing. All the sudden I don't hear fussing anymore. I look down and this is what Madi had discovered:

Just to be sure it wasn't an accident I pulled her thumb out to see what would happen. She waved her hands around a little bit, kinda whimpered and then put her thumb right back in. It's not the way I usually see kids suck their thumb but hey, it's her first time.

Christmas photo shoot, take 1

Photo shoot for our Christmas card. Family pictures to come later, this was all about Madi. Cute ones and funny ones.

  so proud of that double chin

  pre-sneeze

  Who's the cute baby? I am.

  Elvis lip

Hey, what's that? Wonder what it tastes like...  

  Mmm, fingers.

  no more Mom, I'm done!

noisy sleeper

While Madi was grunting and groaning in her sleep this morning I grabbed my camera.

smiling in her sleep

try sleeping through this all the time

December 6

     So today is my original due date. Had we gone to term I'm sure I would've gone into labor this past weekend. Probably early morning Saturday when the roads were getting covered in snow and INDOT hadn't salted yet. Just a guess. There are times I miss not having the chance to rush to the hospital in labor or be big enough to use my belly as a shelf. Maybe not the last one but...
     I've been curious to see how big Madilyn would be at term. We know what she was at 25 weeks, wondered what she'd be at 40. Here's the comparison.

delivery date:  1lb 11oz and 13.5" long

due date:  8lb 9oz and 21" long

Just a little difference between those pictures! Look at the thigh chub, so proud. Our pediatrician thinks Madi will be on track with term babies before she's a year old. We kept hearing that it's usually by two-years old before the field is leveled so we're pretty excited.

      Tomorrow should be our last every two week eye exam appointment. Nice to know Madi's eye blood vessels are fully grown. There weren't any signs of ROP so we shouldn't have to worry about poor eye sight other than what she might have inherited. We also have our consultation with First Steps tomorrow. First Steps can provide therapy and other interventions if Madi is showing any signs of developmental delays. Tomorrow is just paperwork but the evaluation should be shortly after.

wide awake

Madi is such a talker! It's super cute during the day but just not as cute at 3am. Once she starts using words we'll have to start active listening to what she says or we might end up promising a pony for her 2nd birthday or whatever else she comes up with.

All ready for the Colts game.

Pete & Bruiser keeping guard.

back online

     I know, shame on me. If we were still in the NICU I wouldn't have gone this long between posts. But, since we're at home now our schedule's changed just a tad. It's true what they say about not knowing what you have until it's gone. Don't misunderstand, we're grateful Madi's home but there are nights I miss our uninterrupted sleep when she was safe and sound in the NICU. When she first came home Madi got confused on nights and days. We have that fairly resolved but now she's battling reflux. Last week the doc prescribed baby Zantac and it's helped immensely. Lack of sleep has been my biggest challenge. All you parents out there are probably reading this with a knowing smile and chuckling as your own memories come flooding back. Once we get the reflux completely under control I think the sun is going to shine a little brighter at our house.
     Madi's grown to 8lb 6oz since discharge. Even with the reflux, she loves to eat. Besides the Zantac we're limiting the number of bottles she gets to cut down on gas and confusion. We've bought a couple different bottles to see if one helps reduce her discomfort. I hear good things about the Dr. Brown bottles but struggle to get excited about all the pieces so we'll see how these new ones work first. Madi can't get embarassed yet so let me tell you, the kid can belch...and pass gas. I'm somewhat jealous because she'd beat me in a competition.
     We went to the pediatrician this morning and got the green light to cancel the weekly visits. We go back after Christmas unless something comes up. There's a quick visit to get a Cynagis shot between now and then but that's it. Cynagis is one of Madi's protections against RSV. RSV could put Madi back in the hospital so we're following doctor's orders. The other protections are us hibernating until Spring and frequent hand-washing. While we're not bringing Madi out, we are taking visitors. I welcome some adult conversation!
     That's it for now. I'll post more soon. Don't forget to check the picture page!

We're home!

Our first post without a weight to report. We don't have the fancy dancy scale at home. That's right...at home.

We've successfully had one round of diaper changes and medicine and haven't broken Madi yet so I think we're going to make it. *smile*

Here are a couple shots of discharge, more on the pictures page.

even the monitor says we're discharged (red upper right)











 Our two primary nurses with Madi, glove free.

Good ol' room 49. I hope the next visitor enjoys the animals.

Just finished my last hospital visit with Madi. We'll go back this evening to take her home, no more "visiting" with her. From here on out we're living with her

Homecoming Eve

(in the spirit of the holidays)
Tonight is Madilyn's last night in the NICU. We went over tonight to change her diaper, clothes and bed for the last time. It's hard to believe we've spent 11 weeks there. I saw a new family the other day, their little one at 24 weeks. I know the look on their faces was the same Dan and I had. As I listened to the nurse explain what they saw and what to expect, our first few days came flooding back. The emotions were a tad overwhelming. Madilyn's stay has been phenomenal, her progress amazing but there were still those moments of uncertainty. We're extremely blessed to have had our challenges.

The staff at the hospital is indescribable. The best I can do is call them family. Whoever runs their HR department definitely picked the best of the bunch!

I said Madi's homecoming would be bittersweet. Enough of the sappy for now. Look at our big girl:

2790 grams or 6lbs 2oz...over 6lbs!

taken Wednesday night

Where's the baby?

car seat study

Before we could bring Madi home the hospital had to do a car seat study. They're checking to make sure Madi can handle sitting in her seat without incident. Madi didn't have a single desat the 90 minutes she was in her seat. Here she is just relaxing.

 

Friday's the big day

If all goes according to plan we're bringing Madi home Friday afternoon. She's called the shots the past 11 weeks and this is the same. As long as she keeps showing us she's ready, we'll come home.

She's a big girl now - 5lb 12oz. A long way from 1lb 11oz! Even with the additional 4lbs she doesn't have fat rolls yet, just wrinkles. Although she is sporting a double chin. I'll post pictures soon.

Nasal canula comes off tomorrow! We'll start the discharge checklist on Monday: car seat study, follow up brain ultrasound and educate Mom and Dad on how to draw meds. The end of our NICU stay will be bittersweet.

"cautiously optimistic"

I might not have put it in the blog but "cautiously optimistic" has been a familiar phrase these two months. In this case we're cautiously optimistic that Madi will be home soon, real soon. If this was a race we'd be on the last lap just out of the last corner, finish line in sight and using the last energy reserves to cross that line. We're that close.

Madi's gaining weight, keeping her temperatures up, eating like a pig and breathing consistently. If she wasn't on oxygen we'd be outta there. But she is on oxygen and so we stay. When Madi switched to the nasal canula she was on 1 liter of flow. Earlier this week she moved to .75L and today she should go to .5L. How she does with half will determine whether she goes to .25L or completely off. Once the O2 is gone she's a stride away from crossing the finish line.

Dan and I have been in training the past week or so - baths on our own, not using the monitors to follow her breathing, learning to draw meds and running on her schedule. For me the hardest part is not peeking at the monitor to see how low she is when the alarm goes off. As she's matured the lows haven't been as low but Madi'll get choked up every once in a while. Other than those times Madi will drop her sats for just a few seconds and be back. Instead of looking at the monitor we're looking at Madi. Is she getting blue on her upper lip or around her eyes, is she breathing, are they good, deep breaths? She'll self-resolve and want to get right back to eating. Man, that girl can eat! She's "ad lib" now which means she eats as much as she wants. Some overnights she's been as high as 60mls which is almost triple what she got a week ago. Madi's 5lbs 4oz because of it. 5lbs 6oz will be triple her birth weight. It's so surprising to go back and look at the pictures from day 1. Now that we're past that stage, it's a little frightening. The thought of being on our own without the docs and nurses is a tad scary as well but we've had one heck of an introduction to parenting so I know we'll do just fine.

If you've been meaning to come visit you better get a move on. We're checking out of our second home soon. That's not cautiously optimistic either, it's reality.

Madi Mouse

Madi's first Halloween costume, courtesy of our night primary nurse. A true Mini Mouse.

Plus a little preemie humor:  oxygen isn't just for old people!

moments like these

are unforgettable

Madi held by her grandparents for the first time. (more pics on the Pictures tab)

 

curvy road ahead

Madi's been messing with us these past couple days. Her sats have been up and down with the downs being lower than usual. Her heart rate is doing the same thing. Looks like we're traveling up and down for a little bit, straight and boring could only last so long. I just posted that her As and Bs were pretty much gone and we start this.

Blood tests yesterday show her electrolytes are good, hematocrit is good. No growth on the cultures so minimal chance of infection (hasn't been a full 24hrs for any growth yet.) For now, ruling out infection. Chest x-ray in a little bit, echo tomorrow. Check for extra fluid anywhere or her PDA to be more open.

Sigh...

So many new things

Since I last posted Madi's gained 4oz. She's now 4lbs 6oz and 5 grams from 2 kilos (docs like 2 kilos twice as much as 1.) Her dietician got things dialed in with the right supplements for Madi to start packing it on. Almost all of Madi's meals are given orally now. If you watched the pacifier video below you know the little gal can suck. With breast feeding or bottle feeding comes burping. Madi could push air up her feeding tube into the syringe before but now that there's no syringe she has to burp the real way. And can she burp, wow!  Madi's getting  better at processing her food too. At noon she gets several medicines for about 5 extra mls and if she's going to have residuals it's usually that noon meal. When her feeding tube comes out we'll lose the way to check for residuals but that will be another step in the right direction.

Madi's overnights are better too. She's growing out of the A's and B's. We've gone from 4-5 a night to 1 or 2. She had outgrown her caffeine dose so they discontinued that today. Hopefully she'll keep breathing and beating on her own without it.

Gone is the isolette. Madi graduated to a bassinet last night after her bath. She's open to the lights and sounds around her. We hung her isollette blanket from the wall so we can drape her bassinet at night, somewhat like a tent. She seems happy in her new home. As long as her temperature is between 36.5 and 37.5 she gets to stay in the open. Regulating her temp is one of the requirements to go home. Pray she has enough energy to cover this new challenge.

Speaking of challenges, we started shopping for a stroller. Man there are a lot of options out there. We decided right away that a 3-wheeled one would suit us better. It has to handle off-roading at ski tournaments without bouncing the baby out. Big sun shade, adjustable handle height, forward and rear facing and not too heavy are some of the other requirements. It seems the Brits do strollers better. Most of the "cool" ones we found were sold in the UK without the option of shipping to the US. I think we found a winner though, Quinny Buzz. Our local Babies R Us has one we can test, kick the tires, and hopefully confirm we can cross Stroller off the list. One more thing off the homecoming to do list. It gets shorter every week.

Here's to homecoming preparations!

Friday afternoon distractions

Madilyn has definitely mastered the pacifier. She sucks so hard she sucks it out of her mouth. You'll see...

Her a movin' and a shakin'

over 4lbs!

Last night's weigh-in puts Madilyn at 4lbs 2oz; blew through the 4lb mark! Her waist is 9.8" and she's 16" long. She had her follow up eye exam yesterday and still no signs of ROP. Her blood vessels aren't quite developed yet so she has a follow up to the follow up in two weeks.

Madi's bed has been on air mode (turned off the heat) for 5 days and she's down to 28*C. To graduate from the isolette she needs to maintain her body temp when the bed is at 27*. Maybe she'll be in a bassinet in another week. Diaper changes are going to be so much easier in a bassinet than trying to do them through the portholes. It reminds me of that game Operation. You try and do something but end up bumping the sides of the portholes, limited mobility.

Remember when Madi first started getting milk? She got 2ml every feeding. Now she gets 30ml or 1oz. You heard me. We've crossed over into ounces! That totals 8oz a day. I usually order an 8oz steak for dinner and that's what she gets all day. Of course there's the weight difference between her and I but still. I haven't publicly announced before but her and I are working together about once a day so she can get rid of the feeding tube and actually suck for food. Like most things, Madi's a champ. It takes a lot of energy from her so it's only once in a while for now. We'll work our way up to every feeding.

Sometime soon Madi will get a physical therapy assessment. They're looking for good muscle development and flexibility. If Madi has a strong side and weak side then they'll work the weak side to even her out. Physical therapy is just another aspect of having a preemie. Full term babies don't get a physical therapy eval. It's amazing all the ins and outs of Madi we've learned and will continue to learn before she comes home. Who knew?

almost 4lbs

Forgot to mention that Madi weighs 3lbs 15oz. She should top 4lbs by tonight, only a couple grams away. Today also marks one full week on the nasal canula. I think this time is for good.

all dressed up

Like I said before, no more naked baby. Madi's such a big girl she gets to wear clothes now. Every night she gets a new outfit. We need to shrink the ones we have or sneak her some cheeseburgers, not quite filling out the clothes. You can see pics of her first outfit on the Pictures page.

Speaking of cheeseburgers, the doctor gave us some good analogies today. If we were to eat the same amount of calories per body weight as Madi does we'd have 30 doughnuts every meal. Madi's weight gain per day would be equal to us gaining 4.5lbs. Can you imagine? Wait.......yes, I can. Madi's 3lbs 13oz now, gained 2lbs since birth and inching her way toward 4lbs. Grow baby, grow!

Madi's in the "feed and grow" stage as one of the doctors called it. Feed, grow and breathe. The part of Madi's brain that controls respiratory function is still developing so there are times her breathing slows way down, almost stops. Every week is better than the last though. According to the docs it could be another 2-3 weeks before she's outgrown the A's and B's. Mom and Dad will be relieved when the alarms stop.

no more naked baby

Got to the hospital today and there was a stack of clothes next to Madi's isolette. It's time for clothes! Expect to see some new pictures soon.

I was holding Madi the other day thinking how far we've come in 7 weeks. It used to be we couldn't hold her, only touch her through the portholes. We couldn't rub her arms or legs as her skin was too sensitive. Now I can hold her on my chest and comfort her by rubbing her back. What used to be agitating is now soothing. Her progress is amazing.

hefty hairy hiccups

Say what?? Catchy title of a children's book or Madi's accomplishments this week, you decide. Madi has officially passed 3lb 6oz which is double her birth weight. Hefty baby! That additional 1lb 11oz is very noticeable as she's starting to get some chub. There's not enough to pinch or create fat rolls out of but she's headed the right direction. Now that the CPAP hat is off we can see her head and it's hairy! She has some blonde peach fuzz on that head I tell you. We're still waiting to see if she inherited curls. For now we're content to peek in on her and actually see her head instead of a white stocking hat. Pictures of her off CPAP and her hairy head are on the Pictures page.

And the last H of the post, hiccups. Yes, Madi get hiccups. She burps, sneezes and coughs just like you and me. It's different when you're only 3lb, everything becomes dainty. I managed to catch her hiccups on video the other day and thought I'd share. She sounds like a squeaker toy, sorry to poke fun little lady. She'll need to drop those hiccups an octave or two before coming home otherwise the dogs will never leave her alone; think we bought them the best toy ever!

That's it for the hefty hairy hiccups. Have a great day!

no CPAP, take two

Surprise, today's the day! CPAP came off not quite an hour ago. Madilyn's had her noon meal and a bout of the hiccups and still breathing strong.

so close

Just left Madi and she's 2oz away from being double her birth weight. So close to 3lb 6oz!

Madi's getting her first eye exam today. I'm pretty sure she's not going to appreciate dilated eyes. We still have the foam sunglasses from when she was under the bili lights. I'm sure I can figure out a way to stick those to her CPAP hat.
Madi's over three pounds! As of last night's weigh in she's 3lb 1oz. Another five ounces and she'll have doubled her birth weight AND be at the weight where she can start to wear clothes. Photo shoot!! Hmm, what will her first outfit be...

back on track

After a rough couple days Madi seems to be back on track. She was treated with lasix to help remove the fluid in her lungs, got her 5th blood tranfusion and went back on CPAP. The nasal canula might have been too much with the other two things Madi was fighting so we'll give her a little time to rest up and try the canula again later. We do have our spunky Madilyn back, such a character.

2nd bath

These are just a few teaser photos, more on the photos page so go check them out.

balancing the scale

We had a great weekend seeing Madi's full bare head and facial expressions. But we balance all that greatness with a tough day today. Madi was low satting all morning and had 4 brady's by noon. Usually she'll settle down if I hold her on my chest but today two of the brady's happened when I was holding her. Overall she just wasn't comfortable today. The doc did a chest x-ray and found the fluid in her lungs is back. We're treating the fluid in her lungs with lasix, seemed to work last time! Her hematocrit is falling as well. It's not at transfusion level but that's a real possibility in the next several days. I pray the lasix cures whatever's bugging her and our regular Madi is back soon.

no CPAP!

Saturday around 2p Madi came off her CPAP. We traded the big tubes and bubble machine for a sleeker, smaller nasal canula. She did great with the transition, even gave the new tubes a tug right off the bat. That's our Madi!

last CPAP pic

getting the new setup

going in for the grab

Ok Mom, no more pictures.

her new head gear

chilling on Dad's chest to relax

Madi's graduating

to a nasal canula! She's been doing really well on CPAP so this weekend they're going to switch her to a nasal canula and see how she does. This means we get to lose the hat, chin strap and big tubes on her face. We'll be able to look in and see Madi's face...and her hair. We're curious to find out if she'll have our curly hair. No CPAP will be wonderful, pray she's ready for it.

For those that know the Stone side of the family you won't be surprised since they're all lean but Madi has a low level of carnitine. Your body needs carnitine to process fat. Madi's gaining weight but not quite rounding out like she should be. It's not a huge deal as it's treated by supplementing her milk but it can take 6 months or so for her body to catch on and produce enough to stop supplements. Long and lean, wonder where she gets that?

She continues to suck on the pacifier when getting fed. Not all the time but when she wants too. Yesterday she was sticking her tongue out against the feeding tube and chewing on the pacifier, just figuring out her mouth. Sticking her tongue out and sucking the pacifier are okay but we're going to have to nix the chewing for Mama's sake. Yikes!

They're going to discontinue Madi's daily caffeine dose as she grows out of it to see if she's still relying on it to control her A's and B's. It'll take about 5 days for the caffeine to work out of her system so it shouldn't be at the same time as the switch to the nasal canula. Too many changes at once could be bad news.

Pretty much every day she proves she's Madilyn the Mighty and we like it that way.

first bath

Another busy weekend. First off, prayer request for Dan's Grandpa Stone who's fighting off an infection before surgery to fix a knee replacement and my Grandpa Dykstra who went unconscious Sunday morning with no known cause yet. Our families are getting their dose of hospitals!

Saturday Madilyn was one month old and got her first bath, pretty exciting day. We got to remove all wires except her feeding tube. It was wonderful to see just Madilyn, no hat or wires. What a beauty if I do say so myself. What do you think?

 

Madi really enjoyed getting her hair washed:

The nurse asked if we wanted to watch her give the bath or do it ourselves with instruction. How many first-time parents go through the first bath with a nurse? Usually you're at home on your own so I said heck yeah I'll do it. We popped the top on her isolette, folded down the sides and gave Madi a sponge bath right there. She got swaddled in a blanket to help keep her temperature up. I uncovered just the body part I needed, washed it, rinsed it and then tucked it back in the blanket. Kept repeating that until all parts were clean. Madi did amazing being off her CPAP for the bath. The nurse kept an oxygen mask nearby and gave Madi a little boost only a couple times. When we got Madi hooked back up after the bath she was satting in the 90s. She's a tough gal I tell ya.

We also got the results of her echo from Friday. The fluid around her heart hasn't gotten worse but it's still there and the PDA that had closed is open again. They saw some echogenicity or calcium deposits as well. None of these require an intervention at this point, just more to keep an eye on and watch Madi for signs that they're bothering her. Re-treating the PDA with medicine isn't effective at this point and since Madi's not bothered by it being open we're not going to go in and close it surgically. If it's still open around her first birthday they recommend doing so.

A great big Thank You to everyone who has us in their thoughts and prayers throughout the day. As Dan said earlier today, it's easy to stay positive with all the support from friends and family. Thank you!

catch up

I got a little lax on updates this week so we have some catching up to do.

Tuesday Madi got her 4th blood transfusion. She'd had line free arms since the 14th so in order to do the transfusion she needed a new IV line. Madi was a trooper, Mom not so much. Madi didn't wimper or cry at all. Her veins are so small it's tough to find them and after a couple tries where I could see the needle under the skin I had to sit down and support Madi from a couple feet away. Not a big fan of needles to begin with. The transfusion really perked Madi up - we have our Madi back. She's back on room oxygen levels (21% or less), her color's back, more alert and I'm sure her hematocrit's higher but I've forgotten to ask specifically. She needed a lasix to balance the influx of fluid and the first diaper after that was 21g, doing it's job!! It's so nice to have our regular Madi back, praise!

By Wednesday Madi had regained weight she lost after the last round of lasix to remove the fluid around her lungs. Over a kilo! This time it's for real. As of tonight's weigh-in she's 1055grams or 2lbs 5oz.

As you saw in the video below, Madi's discovered the pacifier. Like a lot of things, she does what she wants and if she's not in the mood for the paci then you're not going to get it in her mouth. We're learning she's getting to know the feeding schedule. She'll start to get fussy 15-20 minutes before milk time. We can calm her down with the paci until she realizes that she's sucking but her belly's not getting full. Smart little girl!

She had a follow up echocardiogram today to see what the fluid around her heart is doing. I had to refresh my memory because I didn't remember she had that. Sure enough, diary entry on 8/31 talks about pericardial effusion. Way to go Mom. This is why I write things down. Madi was in the zone during the echo, just relaxing. We'll ask the doctor tomorrow what the results showed.

Speaking of tomorrow, it's a big day. Madi is one month old tomorrow. What a month it's been. I'll reflect on that tomorrow/later today.

G'nite.

drum roll please...

Madi conquered something new and I was lucky enough to catch it on camera. She only does it for a couple seconds so pay attention to her mouth about 15 seconds into the video.

a little speed bump

Madilyn had a little bit of a tough weekend. Saturday she was pretty agitated with no apparent cause. She must've been pretty tired from Saturday because she had several apnic/brady spells that she didn't self-recover from. The nurse had to stimulate (usually means agitate) Madi to get her breathing again. Her chest started to sound a little crackly so they ordered a chest x-ray and found fluid around her lungs. They also did a blood draw and found her hematocrit had dropped in 4 days from 35% to 29%, normal is 35-40 for preemies. The third whammy was that Madi appeared to be hanging onto some solid waste. Thus we began the adventure of trying to find what will reduce her apnic/brady spells instead of waiting to see if she grows out of them.

The hematocrit they were going to watch and see if she bounced back on her own. Solving the waste problem was easy - suppository time. To combat the fluid around her lungs Madilyn got a diuretic (lasix). Add those two together and we were anticipating some pretty hefty diapers.

Sunday night she did as expected - 20g diaper. But she also wighed 60g less. They introduced feeding her on a pump over 20 minutes to see if that helped with her sats. Fill her belly slow instead of in about 5 minutes. Our opinion was that it didn't help since Madi didn't get an empty tube to reflux into.

Monday morning's blood draw showed Madi's creatinine had creeped up to .7 but since it was less than 1 they weren't overly concerned, just another something to keep an eye on.      fluid in lungs - hematocrit - sats after feedings - waste output + creatinine, our new checklist    The doctor heard less fluid around the lungs so she ordered another lasix to continue the drainage. They increased her caffeine amount because Madi had gained weight since the original order. Hoping the increased caffeine would slow down the apnic spells. Madi was still getting milk from the pump and desatting after eating. Monday night they'd discontinued using the pump, yay! We felt Madi did better with an empty syringe to reflux into than getting a slow feed yet trapping the gas. Monday night she was very alert and active. She'd lost more weight, down to 2lb 1oz, but had a pretty hefty diaper again - lasix still working. We had to stop her feed because of an apnic/brady spell that required a little bit of stimulation to recover from. Madi usually does well on her stomach so we moved her to her belly, increased her oxygen to 26% and she was doing better when we left.

This morning's report was that Madi had 4 more apnic/brady spells overnight with only 2 related to feeds. Her lungs sound better than yesterday, praise! Madi's hematocrit was still 29% so they're going to give her a blood transfusion. The transfusion should immediately increase her hematocrit 5-10%.

In summary we've tried to solve the apnic problem with increased caffeine, slow feeds using a pump, eliminating the fluid around her lungs and a blood transfusion. Pretty busy three days! Our prayer is that one of these does the trick.

She's regained some color since Sunday so I'll leave you with a picture of her on the move.

One kilo!

Last night during weigh-in Madilyn was up to 2lb 4oz which puts her over 1kilo. We were excited about 2lbs but the docs and nurses are excited about 1kilo. So we celebrate!!

She was a little agitated last night but we like to think it's because she missed us. Other than that, all's well.

Eat, sleep, breathe...and repeat.

September 16

A couple apnic and brady spells overnight, most were self-recovery. Madilyn's still figuring out how to regulate her heart rate and oxygen levels. If she was still tucked away, my body would regulate her oxygen and heart so it's understandable for these stats to vary. Not that we don't race to the incubator, hands ready to intervene if she doesn't bring them back up on her own but she's expected to have these moments. Madilyn had two more bradys when I was here but one was after lunch so I don't count that one since we know she struggles after eating.

Got an update from her recent blood work, creatinine is at .6 - yay!! If you aren't aware we started at 1.6 and normal is .5. Madi's high creatinine level indicated some malfunction of her kidneys. An ultrasound found she had hydronephrosis which is common in preemies who've received indocin (to close the blood vessel outside her heart). Good news is that as the medicine works it way out of her system her kidney function improves - no intervention needed!!

I plan to add a definitions page to the blog to help with all these medical terms but until then I've found www.medicinenet.com to be a great resource.

Tonight's visit Madi had the closest thing to a pout we've seen. It was quite cute but man, Dad and I are in trouble. We're going to bite the insides of our cheeks a lot with this gal.

They added an arm to her incubator so they can hang her milk syringe really low. The lower it hangs the slower Madi gets fed. Madi did much better keeping her oxygen level up so hopefully we've found the answer to reflux.

stats for today:  2lb 1 oz, 20cm waist, 17gram diaper (must be why her waist shrunk)

Madi’s first modeling gig

St. V Women's wants to update publications and their website with pictures from the NICU and their babies and had asked if we'd be willing to participate. They wanted us for kangaroo care and since it involved getting to hold Madilyn I said "heck yeah." Madi snuggled in right away and true to form, kept one arm free to move about. The photographer was pleased with her "Aww, how cute" move and zoomed in on that hand several times. I didn't see any of the pictures yet but I'm sure she continued to own the camera. Too bad this session only comes with fame, no fortune.

After pictures were done I continued to kangaroo with Madi for almost 2.5 hours. It was tough for Mom to stay awake as it's so comfortable to hold her. Madilyn's temperature didn't drop during the kangaroo which is good - some self regulation is there. She had some ups and downs after her 9am meal but more on that in the paragraph below.

Madi was up and down on her oxygen sats again today. This is common and will continue as she figures out how to breathe effectively. It seems the variation is greater after eating so they're watching her alarms to confirm and if it is then that could indicate reflux. Simply slowing down how fast she receives milk could solve that problem. I'll keep you posted about any changes.

Stats for today:  2lb 1 oz, 21cm waist, 6gram diaper and 24-27% oxygen

First entry

I'm going to try my hand at blogging. It seems everyone's doing it and that rationale worked well for me in high school so why not?/! Here goes nothin'...