Tuesday 8/22

It's hard to believe that Pyka, Party of 4, is now in full swing in Wylie, Texas.  It has officially been a week since we've been HOME with our lovie.

Of course this week has been a chaotic week (in true #pykalife fashion, you expect no less I'm sure).  The day before we were able to take Madi home from the hospital I was convinced I had contracted the swine flu, ebola, or the plague...so before I went up to the hospital I made a stop at the handy dandy urgent care clinic so that she would also not get the ebola.  The good news is they sent me home with some antibiotics and it was only Pharyngitis and we all lived to see today.  The bad news is the day we came home with Madelynn, Mr. Brady got it too.  Thankfully, the contagious period has lapsed and we are all a heavily medicated, plague-free family.

Before Madelynn was released, we were able to room in with her so we would have nurses on call in case anything horrible happened.  It didn't (minus that no good horrible thing called first night parent freak-out insomnia, which realistically, is a week long parent freak-our insomnia).  We took her home on Tuesday, after making what felt like a million required follow up doctor appointments.

(Rooming in, aka getting no sleep)

Her first follow up was Friday and sister girl is up to five pounds!  Since Jason was also out of town on business, I asked my Dad to take Madi and I just to get a second ear in case I missed something...oh and also so I could sit in the back seat and exclaim "She's red! Is she supposed to be red?!" while staring at her and poking her fifty times to check her breathing.  Thankfully, we survived the car rides and we are all fairly good minus the new parent freak-out-itis.

(Ok, Ok, she had freak-out-itis a little too)

Other than that, we are having fun adjusting to life at home, #pykalife style.  My days have much less driving now, so I'm able to focus more on my girl....and pumping (barf).  We feed her every three hours, so the routine is try to nurse for fifteen minutes, bottle feed with extra fortifier for thirty minutes, pump for twenty minutes, clean all parts, put everything away and get ready to repeat in two hours...and maybe get some sleep in between.

Brady is adjusting well so far, and has become the "Be Gentle!  She's special!!!" police.  Trust me kid, I'm being gentle with her...and no I wasn't hitting her and you don't have to call CPS or start throwing a fit because I am BURPING her (a foreign concept to a four year old overprotective new big brother who swears I was "hitting" her and needed to pat more gently).  He also has new big brother freak-out-itis.

Jasper has also assumed the position of protector-in-charge.  Either that or he's just wondering why the heck we've added yet another member to this family and why it's not all about him like the good ole days...

But other than that...I guess all is well with a few hiccups here and there (and a few scary choking episodes)...but we will get through it all.  So thankful our NICU days are over and that we are snuggling and sleeping(ish) at home!

Here's a cute video...Madelynn grunted so Brady decided she was scared and she needed him to sing a song to him so he "wrote her one."

And here's more cute pictures...because, well, now we can...wire and tube free...and because she's cute.

   

Thursday 8/17 - Madi is Home!

Thank you...

I'm usually pretty decent with my words, but tonight I'm struggling coming up with anything that is remotely adequate to express my feelings...feelings of gratitude, overwhelming relief, and appreciation.  In the past month, I've met strangers who have completely changed my life.  I have become close with people I've never met and never intended on meeting.  I've learned so much from all of you.

Thank you...

• Dr. Trylovich - for seeing that my baby needed saving, for saving her, for calming me in a crazy storm, for knowing exactly what you needed to know even though you had never met me
• To the hospital staff at Plano Presby, for your patience with my daily calls, questions, need for help, you were all so polite and helpful.
• For milk donors who so generously gave to the hospital NICU for my girl so she could eat until my milk came in
• For those who saved my baby and took care of her more than I could...I had no idea how much nurses do and now have a deep connection and appreciation for all of you
• Shelby - for immediately coming to my side and encouraging me.  For telling me my baby would be so much better soon.  For taking care of her in the early days, calling her "sister."  You were the person who told me I could hold her for the first time and comforted me when I had tears streaming down my face.
• Faye - for teaching Jason and I the three "P's" that were necessary to overcome our journey...prayer, positivity, and perseverance.  You live by that motto, and even though you broke the freezer door the night you gave us the NICU tour, you laughed, stayed positive, and persevered through teaching us the basics of taking care of our fragile baby.
• Kim - for keeping us smirking with your sense of humor.  You can really tell that you love your job and your babies.  I will always refer to my purple shirts as eggplant because of you, and I will always remember you joking about your babies trying to play oxygen roulette to see which one was the favorite.  By the way, you were ours. 
• Anne - for nicknaming Madi "Boo Boo Poo Poo" and being so gentle with her and me.  I imagine your kiddos and grandkiddos are very lucky to have you.
• Nancy - for showing me how to kangaroo my baby for the first time and being patient with me.  I appreciated your direct approach and no nonsense way of communicating.
• Olga, Ally, Annabel - for caring for Madi during the night when I was unable to.  For dressing her in the cutest outfits and creating such sweet keepsakes for us to take home.
• Lolita - for telling me my baby was "stable" for the first time and letting me know she wasn't a "sick baby."  For saying she was feisty and would be stronger than I expected.
• Neitra - for being so helpful toward the end and really showing us tips and tricks of burping Madi, how to transition her, what to do when she choked and turned blue on me, and amazingly not panicking through any of the chaos.
• Kayla - for teaching us how to mix in her additional calories into her milk, how to give her vitamins, and sharing your stories of your two kiddos at home.
• Paula - for helping us bathe Madi for the first time and for all your tips and tricks as well on burping, feeding, and our transition home.
• Jiyoun - I can't really express my gratefulness for you completely with words.  You were with Madi when she completed all of her bottles for the first time.  You were there the last day when I was scared that she couldn't take the bottle right before we walked out.  You checked on us when we roomed in.  You cared for her the way you would care for your children and you explained your deep connection to your babies.  Thank you for sharing your journey through your chemo treatments and your brain tumor journey.  You changed us, and we are lucky to have had you care for our daughter, all the way to walking us to our car.  I pray your remaining chemo treatments go well.

Because of all of you, my Madi Grace is not only alive, she has now learned how to breathe, maintain her temperature, and eat on her own.  THANK YOU.  Because of you, she is now HOME at 35 weeks gestation.  Because of you, our lives are forever changed, and we have a new sense of gratitude and awareness for everything you do, daily, for simple strangers like us.  We will never forget you.

Sunday 8/13

What a rollercoaster of a week.  It has truly been a hurry up and wait kind of week, and our patience has continuously been tested.  Ever since the doctors told us there was a possibility of Madelynn coming home, we have been so excited, followed by let down. 

Those of you that know me well know I connect with music.  It's like my therapy.  I'm the girl that has a stressful day, warms up a bubble bath and turns up my sad song list to feel at peace again.  Well, there have been so many songs that have run through my head, but the song that has been in my head this past week has been Hills and Valleys by Tauren Wells:

I've walked among the shadows
You wiped my tears away
And I've felt the pain of heartbreak
And I've seen the brighter days
And I've prayed prayers to heaven from my lowest place
And I have held the blessings
God, you give and take away

No matter what I have, Your grace is enough
No matter where I am, I'm standing in Your love

On the mountains, I will bow my life
To the one who set me there
In the valley, I will lift my eyes to the one who sees me there
When I'm standing on the mountain top, didn't get there on my own
When I'm walking through the valley, no I am not alone
You're God of the hills and valleys
Hills and Valleys
God of the hills and valleys
And I am not alone

We really do have to learn to trust God throughout this whole process...through all of the ups and downs.  I've gotten so frustrated when I couldn't get her to drink the last drops of her bottle and we've had to start over again with the counting.  Jason and I both KNEW she could do it on her own, I would just get frustrated if I felt like part of that was my error in giving her the bottle (I mean seriously, how do you hold a bottle sideways and get those last drops into the nipple of the bottle?  Impossible).

After a couple days of being anal and calling or asking after EVERY FEED, a new song is in my head...Coming Home by Skylar Grey (and let's be real, the remix with P Diddy is better...I never said I was perfect lol):

I'm coming home, I'm coming home
Tell the world I'm coming home
Let the rain wash away
All the pain of yesterday
I know my kingdom awaits...

Madelynn finally completed eight bottles in a row yesterday.  As of this morning, they have taken her feeding tube out and set her potential discharge date for the 15th (one day before her "month" birthday)!!!!  She still has to complete the next eight bottles without problem (well, at this point, now five) and then we can take her HOME.  There's more fun that starts once she gets here, but she can finally be home.  I can finally feel like I will be a 100% mom instead of a 50% mom.  I can be the one taking care of my babies...both of them.  We can eat dinner as a family.  I can hold her for more than once every three hours for a "touch time."  We CAN....NOT...WAIT.

(Raise your hand if you are tube free)

Lift some prayers up for our family that everything continues to go smoothly so we can take our girl home.  She's passed the hour and a half car seat test with no alarms going off, and we room in with her at the hospital tomorrow night if all goes well.  We are so close we can taste it...and I'm pretty sure we've never felt so happy, nervous, and excited all at the same time.  Jason keeps saying "I don't know what to feel yet."  And that is exactly true...please pray our excitement is real this time.

(NBD...just rocking that car seat test)

(Over this already...can we go home yet?)

 

Thursday 8/10

Today marks twenty five days in the NICU.  Twenty five days of our family being separated.  Twenty five days of three hours driving, six hours at the hospital, four hours pumping, and still no baby at home.  Twenty five days of emotionally and physically exhausted...and she is still not coming home.

It's frustrating.  Every nurse keeps saying to get ready at home because we are so close.  The nurse practitioner saw her last Saturday and said "I'm thinking 7-10 days" and on Monday changed her mind and said "I know I said 7-10, but it's likely going to be closer to 3-5."  It's not.  The more they keep saying she's close, the more excited we get.  We've prepared the house, all of her things are ready...and she is still not coming home. 

"You are asking her to do something that she is not supposed to be doing yet," the nurse reminded me tonight after she only took half of a bottle and had to be gavage fed the rest.  I still don't understand.  She has to take 8 full bottles within 24 hours for two days to go home.  Yesterday, she took 7 and 3/4.  You read that correctly, 7 and 3/4.  Since the 3/4 isn't a whole, the 24 hours starts over again.  And I guess I'm glad it did, because today, she only took 2 bottles.  "It's like you've never been asked to run before, and you've just run a marathon...you would be tired too.  And it's ok...she's just being a preemie."  The nurses are so encouraging and helpful, but I'm drained. 

I really wanted her home by her first month milestone, for completely selfish reasons.  I have the cute stickers to attach to her onesie to take the cute photos to document her each month over a year.  We are getting dangerously close to that mark, and I'm just not sure it's going to happen.

She was doing so well, she was our rockstar baby.  She still is a rockstar, it's just another reality check I guess.  Two steps forward, one step back... 

Tuesday 8/8

In the Bible, Peter references that to the Lord a day is like a thousand years and a thousand years is like a day (2 Peter 3:8).  Today, it kind of felt like that in the NICU.  I feel like in a NICU day, it can feel like a thousand years, but then a thousand things can happen in one day. 

The day started out like any of our "normal" days in NICU.  Arrive, get a locker, grab a drink, grab some bottles, go to the pumping room, check in bottles, meet Jason in the lobby, go back to scrub in, put soap on my hands...and then the normal stopped.  As we were scrubbing in, an alarm started sounding...loudly.  I glanced over and noticed a blinking light above Pod F.  Then a nurse ran by.  I'm not talking a brisk walk, I'm talking Olympic sprinted to the pod.  Time started moving slower.  Another nurse ran by, then another.  I counted at least ten nurses running and time seemed to stand still.  There was another couple waiting on Jason and I to scrub in next, and I glanced at the other mom.  We both had tears in our eyes as Jason said "That is scary."  We knew that alarm wasn't good, and someone's life was likely about to change for the worse.

It's like that, some days in the NICU.  A brutal reminder of how fragile life can be.  Some days you overhear parents talking about calls they get that aren't good and how their babies aren't stable.  Some days you overhear calls urging parents to get to the hospital quickly because their baby has taken a turn for the worse and the end is near.  Some days you overhear parents saying their child was given their last rights.  And some days, like today, you hear alarms.

We knew it was not Madi, but it still causes you to stop, gulp, and pick your stomach up off the floor.  Many use the term "blessed" when they talk about Madi or other babies..."you guys are just blessed with Madi," etc.  It bothers me when people say that because I don't think she's any more blessed than other babies.  Fortunate, maybe, but that baby who's heart stopped today...she wasn't "not blessed."  Her parents weren't "not blessed."  God didn't dislike them or favor one more than the other.  I struggle when people use that term.  I struggle to understand why people would think that way.  I struggle and wonder why some parents get the short end of the stick, why they are the ones who deal with the worst news possible.  But anyway, that was the start of our day.  And I still can't get that baby in Pod F off my mind.  That was Madi's pod until a few days ago.

Madi did have a lot of positive things happen today.  Jason and I were able to give her her first swaddle bath.  I had to run to the store in between visits yesterday to get the correct type of tub because the one we had was not approved by the hospital.  She loved her bath, and loved getting lotion put on afterward.

After her bath, they wanted me to bottle feed instead of nurse (read attempt still), so I did that and she completed the bottle like a champ.  She actually completed all four day shift bottles, which is fantastic news and means she will likely be going home soon.  I had a bit of a scare when I was kangarooing her after her bottle though.  The best way I can describe it is as I was holding her she just...paused.  Her alarm started going off and "Brady" was flashing across the screen.  I panicked and the nurse ran in and asked "Did you move her?  What happened?"  All I could explain was that she paused.  It's like she took a breath....and then literally just...paused.  She held it, her face turned red, and the alarm went off.  Her heart rate dipped below 100, and it is usually in the 150-190 range.  It scared me.  They keep saying how she is supposed to be ready to go home soon.  A baby isn't considered stable if they have a bradycardia episode and has to be brady free for five days before going home.  The nurse looked at the time, and because it didn't last long enough (it has to last more than 20 seconds), it wasn't considered a true bradycardia and would not go against her in terms of discharge.  But it scared me.  How am I supposed to take this baby home when there are still scary things that can happen?  How will I know when she is "pausing" or when it's more serious?  Will my stomach keep dropping every time something like this happens?  It was just...scary.

On a positive note, she finished all four bottles during the day shift.  She has to finish eight bottles per day for two days to be able to go home.  They keep saying we are close.  She also took and passed her hearing screen today.  She was given her hepatitis B shot yesterday, and was switched to a vitamin and milk fortifier today that we will be able to take home with us once we are discharged.  We were taught how to mix everything, and some tips to make sure we are doing proper techniques with everything.  We brought up her bath and her car seat for the car seat test that will likely be coming in the next few days.

We are getting so close to going home...but a thousand years still feels like a day and a day feels like a thousand years in the NICU.  I just want to make sure my baby stays healthy, and for now she's in the perfect place should anything crazy happen. 

Sunday 8/6

As this weekend winds down, I thought it might be time for another quick update on our Madi.

Our girl is making so much progress and we are incredibly thankful.  There are three major milestones she must accomplish prior to graduating from the NICU as well as a list of ten or so tasks she/we must complete together.  The three milestones are breathing on her own, regulating her own temperature, and eating 8 bottles/day.  The list of tasks looks like this:

This week, we completed our NICU care and CPR class as well as got a few things in order that were recommended there.  We now have an emergency station set up in our house, including a landline, should something ever happen.  After hearing a few stories from class, the last thing we would want to do in the event of an emergency is be scrambling to find our cell phones or be worried that they weren't fully charged, so we went ahead and bought an old fashioned phone that plugs into the wall and set that up with our emergency station.  We also put together a few finishing touches on her nursery and got some diapering essentials organized.

Yesterday was a huge day for Madelynn.  She hit 1800 grams and was moved to an open crib one day early and got her pulse oxygen monitor completely taken off.  She has been maintaining her temperature with no issues since then, so we can hopefully check two of the three major milestones off the list.  She has also been attempting to take bottles almost every care time (every three hours).  As of today, she is completing about two bottles per shift, or four bottles per day, and drinking some of the others...just not fully completing.  This is great news, so great that the nurse practitioner has warned me it may be as early as 7-10 days for her to come home!  That is of course if everything goes well and her endurance improves steadily this week...and if she passes remaining tests.  We have a few more tasks left to complete on the checklist, so I am frantically trying to get all the things I need in order to get those done.  (Side note...she is still not nursing, still working on that one...ugh).

(snoozing away in her new open crib/bassinet)

Today, Madi is officially four pounds!  It's crazy to think she has gained a pound since birth, and equally crazy to think she might be going home pretty small.  I have a feeling we won't be traveling much because I'm going to be so paranoid with her in the car seat once we actually do get discharged.  But we shall see, trying not to jump the gun or get too excited, but goodness gracious it would be wonderful for her to be home and not having to travel back and forth every day.

(Eek!  Four pounds!)

All in all it was a good week for her.  I can not wait to have my girl home, to have our family all in one place, and to worry more about snuggles and loves than monitors and numbers and statistics.

So How's Brady Doing?

...Because today I need a break from the monitors.  Today I need a break from the medical jargon.  Today I need a break from the obsessing over each ounce gained or eaten, each desaturation, each number on the screen, each wire connection, each scary thing they throw at us that we have to be on the lookout for, each timer, each alarm...because today I need smiles.

Let's talk about my boy.  THE boy that made me a mom.  In all his Pyka ways, his silly, his not-so-humble, his insanely intuitive characteristics, all the things that make up his personality, I'm so proud of the role he is taking as big brother. 

Now...if you have been around my innately curious four year old lately, you know not everything goes quite so smoothly.  He's stubborn in the mornings and takes almost thirty minutes just to go to the bathroom when he wakes up.  He refuses to eat dinner half the time because it's too chicken-y or pasta-y or because it has a cilantro in it and green things just don't belong on his plate.  If it were up to him, he'd be planted in front of the TV watching Fireman Sam all day long instead of going to school or doing anything remotely productive. 

But my friends, his big brother role...now that is something special.  He's been talking about it since we told him we were pregnant.  He tells his teachers (and because he's Brady, complete strangers) how he's going to teach her all of the things...you know the important ones...like how to catch a ball, how to play with her dollhouse he's going to buy her, and my personal favorite, how he's going to protect her from monsters because "he's great at punching."  (Please don't call CPS, I promise, we don't condone punching monsters in this house.)

All these adorable things aside, he has been fantastic with his baby sister.  He gladly walks into the NICU, greeting all of his new girlfriends (read nurses), making quite the impression from the start.  As part of the procedure, his temperature is taken, he is given the most adorable kids hospital gown, puts on his mask and heads back to scrub in, encouraging everyone that "it's ok, because I watch Doc McStuffins" (for all of you crunchy parents who probably spend your Saturday mornings doing toddler yoga and planning out your vegan meals, that is another cartoon).

He scrubs in, only slightly complaining that the soap stings his eczema, and then heads back to pod F to see his girl, waving to more girlfriends as he walks by. 

When he gets there, for five or so minutes of complete focus, he is the sweetest, kindest, most gentle little boy I've seen.  He leans in, says "Hi baby sister," "I love you," and "Grow big and super strong and get super gecko muscles."  Each time we are there, he politely asks her nurse "Is she going to be ok?"  about twelve times.  He then reminds her that she is his "favorite girl in the world" and that he can't wait for her to grow big and strong so they can play.  It warms my heart. 

Granted, he is four, so after that five minutes is up, sometimes Jason has to drag him out so he doesn't wake up the entire NICU of babies...exaggerating a little, maybe, but hey, he's four...and he's Brady.  Then we typically ask him how it went, and we get a typical response...

But in all seriousness, he's doing awesome.  He loves his baby sister, and will proudly tell anyone that, he keeps her in his prayers each night, and can't wait for her to come home so he can get his monster punching business started....