need a new elf

Next year I'll have to be more selective in picking my elf to help wrap presents. This year's little girl does a great job un-wrapping
            but she's so darn cute!

Exploring the Christmas tree

Last year Madi was fascinated with the Christmas tree. You could sit on the couch with her snuggled up at your shoulder and she would stare at the lights forever. It was almost as popular as the ceiling fan. I was curious to see how she'd react to the tree this year. I was super motivated this year and had the tree up before Thanksgiving. There are about half as many ornaments as last year but times they are a changing. We now have a little one that would love to pull, twist and eat the ornaments. I couldn't have a fully decorated tree 2/3 of the way up and nothing at the bottom so I went light everywhere. The lower ornaments are virtually indestructable, just for Madi. When I had it all done I turned on the tree, closed the blinds and went to get Madi from daycare. When we got home I brought her right to the tree and sat her down. She was a little tentative, kept looking at me for permission to touch...which I gave. She went for the jingle bells right off, still does. After she goes to bed at night we search the house for the bells and put them back on the tree so she can find them again in the morning. It's a great game.

 

I absolutely love to watch her process. You can see her wheels spinning as she tries to figure out a new discovery or tackle a new challenge. It's simply amazing. Her balance while walking is much better. She'll toddle around drinking from her sippy cup or her latest thing is to carry around a bag or drag a blanket. Tonight she had a tape measure between her legs like jump rope. In one hand, behind her back and through her legs and up into the other hand and trying to figure out how to get it free from her legs. In the mornings we usually play on the bed for a while and now she's gotten to the point where she can stand and walk on the bed. She doesn't cross it but gets a good 3-4 steps in before she loses her balance. And climbing...oh my goodness is she a climber. If she can't find anything better she'll use you. Madi will virtually be on your shoulders in a couple seconds. And then she grunts because the "ladder" is gone, like it's your fault you're not eight feet tall! The other night Dan neatly folded the laundry and had it laid out on the couch. Madi came along and in less than a minute had shirts and pants in a pile on the floor. She's this little force of destruction and we can't get upset because she's just exploring...and so darn cute.

Check list is complete

PRAISE!!

Madi's PDA is gone. Well, not technically but pretty darn close. It's gone from small to tiny, only 1mm in size and absolutely no flow through it. This little dash is about as big as her PDA - amazing that they can see something so small. So for all intents and purposes, the PDA is closed. The doctor couldn't get a catheter in to close it even if we wanted him to. We say Thank You for all prayers said on Madi's behalf, she is one blessed little girl.

We are now officially -ologist free. The only doctor Madi has is her pediatrician. Wheh! What...a...relief.

Madi wasn't having the best time during the echocardiogram but she did her best to help out. She was helping Lee hold the wand, got her fingers in the jelly and spread that around herself, turned to watch the monitor and was just kinda all over the place but not really. She wasn't crying or squirming to get free yet she didn't lay real still either. Madi was entertained for a while by the Old McDonald video that was playing but even that interest faded after a bit. When Dr. Parikh came in for his look-see he gave Madi the extra wand in attempt to divert her attention but that didn't last long. It's like they know what they've been given isn't the real thing so it's not as interesting. I'd venture to guess that the best part of the visit for Madi was playing with the rolly stool in the exam room. She pushed it from wall to wall, pounded on it, inspected the wheels and even got Dad to give her  ride. Very intrigued with the stool.
(video won't load so you'll have to hold on til I figure it out)

Another doctor's visit means updated stats:
Height:  32"
Weight 22lb 5oz
100% oxygen level
blood pressure cuff didn't register

3" and 2.5lbs since her 1-year check up. Not too shabby!

fun with gift bags

We were celebrating November/December birthdays over the weekend and Caci had this big gift bag. What do you do with a big gift bag and an infant? Why you put the two together. Madi enjoyed playing with the strings as well as her ride around the living room.

In two days we go to the cardiologist for a scan to see if Madi's PDA is still open. Please keep praying the scan will show it's all closed up so there's no need for surgery.

You know you're a NICU Mom when...

I've had the idea for this post for quite a while but didn't want to write it prematurely cuz I might miss something so I've been writing things down as they come to me. I have a pretty good list so I figured I'd go ahead and post. I can always add to it later, right? I said NICU Mom but most of these apply to Dad too, didn't mean to leave him out. I hope some of these make you smile. Here goes:

You know you're a NICU Mom when...

1. Your car drives itself to the hospital, even though you've been discharged.
2. You regularly speak in five syllable words.
3. You greet visitors with hand sanitizer.
4. You get a lump in your throat and tears in your eyes if you see the neonatal ambulance on the road.
5. You say a prayer for whoever's in that neonatal ambulance.
6. You get angry with pregnant ladies who want their baby to come early.
7. The sound of a ding or alarm makes you jump & look for a monitor...even if you're at the mall.
8. You can convert grams to pounds and ounces.
9. Kangaroo becomes a verb, "I kangaroo'd for three hours today."
10. You envy the mom in her third trimester who can't see her feet.
11. After you're home you wonder what your little one's diaper weighs.
12. You want to go back to the hospital to suction little one's nose real good.
13. While talking about your little one someone asks if you're a nurse.
14. You miss your nurses every day.
15. You bawl when the Pampers NICU commercial comes on.
16. You know which bathroom and lactation room at the hospital is the best.
17. You're tempted to take little one's temperature every day...after discharge.
18. You buy the convertible car seat rated for 4lbs and up just in case you need it for the next baby.
19. You have a panic attack when thinking about the next baby.
20. You think an 8lb newborn is ginormous.
21. You know more acronyms than military personnel.
22. You contemplate grocery delivery in winter so you don't have to take little one out during cold & flu season.
23. You're not offended if another parent asks if you or your family's been sick the past 14 days.
24. You can interpret the monitor of someone you're visiting in the hospital...even worse if you silence their alarms.
25. You use familiar objects to explain your child's size/weight.
26. You think doll clothes are huge.
27. Post-NICU your Facebook posts celebrate how many -ologists you've been able to break up with.
28. The hospital's NICU number is still programmed in your phone.
29. You're just as excited to catch up with your doctors and nurses as you are your own family at Thanksgiving.
30. You buy a second freezer in order to store more breastmilk.
31. You pick your wardrobe based on what's easiest to kangaroo in.
32. Breastfeeding in public is nothing, you've been critiqued by so many people before you even left the hospital.
33. You couldn't imagine what it's like to take your newborn home 48hrs after delivery.
34. You wonder how in the world you didn't fall apart while balancing NICU and home life.
35. You use celcius instead of fahrenheit.
36. You can correctly measure suction and feeding tubes.
37. You know it's perfectly normal for newborns to have caffeine.
38. You help other people with directions at the hospital.
39. Your little one's shirts are side-snap or kimono style.
40. You couldn't find one single store that sells preemie diapers in bulk.
41. The travel Kleenex pack in your purse reminds you of your little one's first diapers.
42. You celebrate two birthdays a year - the one that is and the one that should've been.
43. You still bring goodies to the NICU.
44. You know when Prematurity Awareness Month is.
45. You know there aren't any good Homecoming announcements out there.
46. There's no way your little one could sleep more than an arm's length away after discharge.

47. You know more about insurance billing codes & procedures than the person on the other end of the customer service line.
48. Cardio no longer refers to a great workout.
49. Navigating the salad bar with the sneeze shield is easy - try diapering through port holes!

full-time walker

Madi has pretty much ditched crawling for the faster, less stable walking. Her hips don't move like the dashboard hulu girl anymore but there's still a little wobble. Seems like every day she shows us something new. If music is on she'll sway back and forth or bounce up and down. Loves to do the Indian cry (bounce your hand off her mouth as she shouts). Tooth #4 finally popped through. She's figured out how to open the toilet lid and tries to investigate the mini-pool. Yesterday she mastered taking off her own diaper. Yikes! She has latched onto her Dr. Seuss Wocket, thanks Nurse Alex! He goes everywhere with her and solves all of life's problems. Lonely in the middle of the night? He'll cuddle. Fall down? He'll comfort. Happy? He has spiked hair, of course he'll make you smile. In this video Madi gives him a ride:

(videos are too big so I have to use the YouTube link, apologize for the ads)

movie bonus

Pictures and a movie...you lucky duck.

Madi was zooming around the house tonight; just couldn't resist.

fluffy duck

Little Miss Madi turned into a fluffy duck for Halloween last night.

We went to Jill & David's for burgers and dogs on the grill plus a camp fire. Madi did real well around the fire, was curious but kept her distance when we said No. Whether it was the big booty or shoes, she wasn't too into walking around. The extra fluff in the costume might have thrown her of balance but it kept her nice and warm. She did real well keeping the hood up too. Normally she's not too excited about hats or things on her head. I had to get one picture of her leaning over so you could see her duck hood. At the last minute I thought it would be cute if she'd carried around her rubber ducky. We'll work on accessories for next year.

14 month photos

14 months...wow how time flies. This time last year Madi was just beginning to breast feed and take bottles. The feeding tube stayed in until we knew she'd take to her new way of eating. Other than monitor wires the feeding tube was the last thing to get rid of. We knew the nasal canula would be around for a while as she was still having apnic and brady spells. Madi was 4lb 6oz with a 10" waist. Her "angel kisses" on the back of her neck just appeared, thought she had a rash. We were all ready to blame the CPAP hat but turns out it was a birth mark! Madi finally moved from the isolette to a bassinette - open to the world 24-7! So much easier to do diaper changes without port holes. Both sets of grandparents got to hold Madi for the first time too.

A year later she still has the angel kisses but her hair's starting to hide them. She's about 23lbs, 30" tall and has a 21" waist, no butt. Can't keep pants up on her for anything. Don't know how many times she's crawled or walked out of a pair of pants. Gets a 4oz bottle at bed otherwise it's sippy cups and regular people food. Hasn't met a meal she doesn't like. Her vocabulary's expanding and she's begun to walk. All clear from every specialist but the cardiologist - see him on December 1st.

She's our Miracle Madi. We thank every one of you for your continued prayers.

Some of these aren't my best work but the subject is too cute to pass up. 

her Frankenstein pose

 

 

bath time escapee

Guess who's walking...

Prettiest Colts Cheerleader

With those eyes, eye lashes and smile she's only allowed to be in a cheerleader uniform until she's 5. After that it's back to sweatpants.

Getting ready to tackle Bruiser

What do you mean we lost? Again?/!

eating with utensils

We've been working on getting Madi to feed herself with a spoon or fork. She knows that the food from the plate goes on the fork and the fork goes in her mouth but it's usually not coordinated. Last weekend when we were out for breakfast I thought I could catch her in action showing off her skills. Instead Madi decided to swipe all the food off the plate and then pick up the spoon to eat. Oh well.

I was able to catch her earlier this week doing a much better job of feeding herself. And of course she tries to share with the boys too. *smile*

another graduation

Today we got kicked out of the developmental clinic. As expected - all clear from the developmental doc. Madi's graduated from that program, only have to go back if we have concerns about her development. Praise!! Of course we knew she was exceptional.

The remaining specialist that hasn't been crossed off the list is the cardiologist. Madi goes to see him December 1st. If her PDA is still open his recommendation is surgery to close it. No matter how thoroughly it's explained there is no such thing as an "easy heart surgery" to a parent, or at least not these parents. So the prayer request is that when they do the echocardiogram on December 1st it shows the PDA is completely closed.

I met a new mom of twin boys in the waiting room at the developmental clinic. Their appt was right after ours and I had to chuckle when she asked if Dr. Escobar was on time and the nurse said yes, ahead of schedule. It was 9:40, our appt was at 9:30 and if we're in the waiting room instead of the exam room I can't see how the nurse thought that was "ahead of schedule." Anyway, it was an ice breaker when that lady got settled in. "Um, not really ahead of schedule so you know." She delivered at 34 weeks and both boys had abdominal issues. They also shared the same low carnitine levels as Madi had. We chatted just briefly but she couldn't believe Madi's story. Encounters like this make me wonder about God's plan - was this experience for Dan and I, was it to impact a stranger's life, will it affect what Madi decides to do with her life. I have to admit that in the beginning my Why's were angry but as time's gone on it's more of a curious Why - what's the purpose/impact? I don't expect a moment where the lightbulb goes on and all the sudden we can point and say "That's why" but I do wonder from time to time.

I was a little off when I wrote about Madi's progress towards walking. Twice now she's stood up. Both times we were outside in the yard. She got into her kneeling position and then just stood up. Nothing to hold onto, nothing for balance, right in the middle of the yard just stood up. Neither time has there been a witness or camera nearby. I haven't been able to get her to do it when Dan was around either. I figured she would be standing at the coffee table or couch and then let go, not just pop up into a stand in the middle of the yard. Aye carumba! This is happening way, way too fast. I think I've found a way to postpone her walking if I really wanted to - keep her in shoes. I don't think Madi knows what to think of shoes. She definitely doesn't like having them on in the car. And she walks funny whenever we have her in shoes, like she can't figure out why her feet are so heavy. Madi usually ends up clomping around or standing on her tiptoes the whole time. So shoes may be my secret weapon.

And of course a blog post is no fun without pictures:

look at my teeth!

I have dimples too!

sharing the stick with Bruiser

coming to get the camera

I'm hoping this nice weather holds out and schedules coordinate. If so, I'll have some pretty stellar pictures for you to look at in a couple weeks as we're hoping to get family pictures taken next weekend. Yay!

what we've been up to lately

Madi is cruising everywhere. She's getting a tad more adventurous and will stand with only one hand in yours or take the couple steps between the couch and coffee table but that's more of a controlled fall forward. We've been able to get her to stand on her own for a few seconds but she usually reaches out for us once she realizes she's on her own. The latest development is her kneeling on one knee with the other foot on the ground, like she's ready to push up and stand on her own.

Madi is pretty much done with bottles and gets everything from the sippy cup. She does know what real cups are for so we had to pull that from the bath toys. Can't have her drinking the bath water, gross. She has a tea set that came with two cups and she'll pick one up and put her to her mouth. She also likes the cold bottom of a can. We usually can't get a pop from the Pepsi machine without Madi right there to suck on the bottom of the can for a while. It'll only be a matter of time before she picks up one of our opened cans and helps herself. Hopefully it'll be a pop and not a beer!

Pete and Bruiser are still great with Madi. Pete's friendly but he tends to move out of her way whenever she gets close. Bruiser just lays there and takes whatever she dishes out. For a while Madi was fascinated with his ears. She'd look at the underside, pull on them, stick her finger in there and Bruiser would just lay there. She's laid on top of him, crawled over him, grabbed his tail and tried to put his paws in her mouth. If we're outside playing fetch he'll put up with her taking his stick. That is saying a lot as the dog has an oral fixation, gotta have his toys to chew on. 

We had our first real sickness last week. Madi had a runny nose off and on, figured it was due to teething but all the sudden in a span of a couple days she got so congested and developed this horrible cough. It was like she felt the gunk in her chest but couldn't figure out how to bring it up.One time she did figure out how to bring some of it up, and her entire dinner. Vomiting must be one of the scariest things to a baby. Madi cries and gives you this look like "what just happened to me and why does my nose burn now?" I took her to the doc and some nasty stuff is going around. Dr. McManus has seen kids go from a "cold" to pneumonia in a couple days time so she put Madi on an antibiotic right away. Said most parents aren't bringing in the kids early enough to head off pneumonia. Yikes! Glad I brought her in. Plus, I won't lie - Madi was waking up every couple hours and we needed to get her back on track. It's amazing how spoiled you get when given the chance to sleep through the night on a regular basis. We went to the dr on Thurs and by Sunday Madi sounded much better and was sleeping almost through the night. She still has a lingering cough but nothing like before. While at the doc's we got her first of two flu shots. Hopefully that'll cover her and we'll pray it's an easy year for RSV. We're still arguing with insurance over her Synagis shot in March so I really don't want to have to start those shots again. Silver lining is that they get us to max out of pocket in about two shots.
         Side story: so when I went to pick up Madi's prescription the pharmacist asked if I needed a dosing syringe. Doc had already told me it would be 2ml/dose so I said no. Pharmacist then proceeded to tell me how important it would be to give Madi the right dose. Obviously the lady didn't look to see that we've been giving Madi 2ml of medicine every day for about a year. I told her we had plenty of syringes at home. Unbeknownst to me an older gentleman had walked up behind me and when I said we had plenty of syringes at home he gasped and said "Good Lord!" Aw geez, not like that. Made me chuckle.

Last week I was feeling spry and decided to try and wrangle both of the dogs and Madi for a walk on the Monon. Instead of  taking the stroller I put Madi in the baby carrier. She was pretty content in the carrier, even held Bruiser's leash for a while. I couldn't see her face but I could tell she was flirting with the folks passing by based on their comments. Madi absolutely loves to be outdoors. Not too sure what we're going to do this winter. I wonder how she'll react to touching snow for the first time...

I took a few pictures after our walk. Of course Madi zoomed in on the metal part of the leash, shiny!

Thursday we have another follow up at the developmental clinic. It's usually a rather long appointment as we're seen by the nurse, therapist and doctor with each person having their own evaluation. We're expecting the all-clear like always. Especially since our pediatrician said Madi's developmental milestones are tracking with full-term 1-year olds. I'll let you know what these guys say. Since we'll be by the hospital we might just pop in for a visit.

pumpkin patch

Yesterday we took off in search of a pumpkin for the house. There were two orchards about the same distance from the house, one was having a festival so that's where we headed. Wasn't exactly what we had in mind when we pulled up. The "orchard" was essentially a big backyard surrounded by housing developments. As you looked at the pumpkin patch, right behind a privacy fence was a little neighborhood, playground equipment in the backyards...not quite what I'd pictured. This place was what I'd call a city-orchard. Somewhere folks familiar with skyscrapers and bellmen come to experience "the country." Next time I don't see mention of taking a hayride to the apples or pumpkin patch I'll know they're talking about a city-orchard. Hopefully the warm weather will stick around long enough for us to try again and make it to a true country-style orchard. We did snap a few pictures while we were in the backyard orchard:

kiwi fruit

Kids are quick! I put Madi on the counter in front of me so I could unpack her diaper bag this evening. Less than 10 seconds later she's grabbed a kiwi and bit off the end, skin and all. Okay, then. I put a bib on her and plopped her down in the high chair. I peeled the skin off and put the kiwi on her tray. The kiwi fruit didn't stand a chance to survive. Madi had a ball attacking the thing. Going to have to keep this in mind for future entertainment.

Madi's first birthday cupcake

I made a cupcake for Madi on her actual birthday. Not that she knew the difference but you gotta have something special on your birthday.

sharing cupcake with Mom