Monday 7/31

Struggling a bit to keep my eyes open tonight, but it is time for another update on Miss Madi girl.  It's hard to believe that it has been two weeks since her action packed arrival.

Things are starting to slow down a little bit, but we are still thankful for a few things that she has progressed in over the past few days.  She is now completely off of caffeine.  They put most preemies on this to avoid any bradycardia issues, but after her oxygen was off this was one of the next things to wean.  I believe I saw one alarm for a bradycardia issue, but since then she has not had any to my knowledge, so that is good.

She is doing pretty well in the weight gain department as well.  Her goal is to gain between 15-30 grams per day, averaging roughly half a pound a week with the exception of the first week, which they anticipated her weight to decrease.  This morning she weighed 1630 grams, or 3 pounds 9 ounces.  They are running into a bit of a conundrum with her current living situation.  She seems to be maintaining her temperature on her own already, but they are not allowed to move her into an open crib until she reaches 1800 grams (roughly 4 lbs).  They also are not allowed to decrease the temperature in her incubator below 28 degrees, but she is getting a little too warm in there.  I anticipate she will be 1800 grams in a week or so, but they have mentioned that if her weight gain stays steady and strong over 5 days, they will consider moving her a little early to the open crib.

The next big phase we have entered this week has to do with nursing/feeding.  She has been such a rockstar at everything else that I think I set my expectations too high for everything remaining.  Feeding has been the first issue that she has not excelled with flying colors.  It is a bit of a reality check for me, but the nurses keep encouraging me to remember that at this point she should still be in my belly and is not expected to know how to eat until she would normally be born.  I have to remind myself that patience is a virtue...one I struggle with, but hey, a girl can have goals.

We attempted nursing starting Friday.  She immediately latched for her first session and I got really excited.  But that was it for day one.  She sat there for a couple of minutes before they switched me to kangaroo care.  Due to some communication problems I was a few minutes late to her second session and they had already started gavage feeding her, so I was really upset with myself about that.  On Saturday she did about the same for the first couple of minutes with very little progress, and on Saturday night she showed no signs of cueing so I wasn't able to even try which was discouraging.  Sunday she made it maybe a minute longer and tried to suck but that was it.

Today, they gave her a bottle for the first time.  She is on a "cue based" system which basically means if she is showing any signs of rooting or being interested in the bottle, they will offer it to her during her feeding times.  She showed signs of being ready today, and I helped feed her the first bottle.  The rules are a little different from a full term baby, but I was able to get the positioning and rules down a little bit.  She actually ate 15 cc of her 35 cc bottle, so in my opinion, that is great.  I asked the nurse if that was good but she just said each baby is different and progresses at a different rate.  I was thankful that she did show some progress in that area though and I will take it as a win.  I was starting to get a little bummed with this part of the process.  It will still be a long road for nursing, but we will get there eventually.

Another minor bummer...Madi has her first yeast infection.  I'm not exactly sure how she contracted it, but the nurses assured me that it is also common in preemies.  I can barely see the rash, but they will administer a special lotion on her hiney for seven days and hope that it doesn't spread.  We have to wash hands very thoroughly after changing her diapers to make sure I don't get it as well.  This was a small reminder to us that her immune system is still very fragile.  The nurses reminded us that even during the transition home when we finally get there, we will need to be vigilant with hand washing, touching, and making sure people don't...sniff sniff...kiss her.  That was a little hard to swallow for a mama that craves to love on her girl, but we understand where they are coming from and want to do our absolute best to keep her healthy.

The last big milestone we hit today was actually for me.  I had my two week follow up with my doctor and I was finally cleared to drive!  I was thrilled about that since it has been roughly 6 weeks since I've been able to drive myself.  I'm thankful that people have been so gracious as to help me when I needed a ride, but I am really really grateful to not have to be at anyone's mercy anymore.  Now I can get back on track with my visitation routine and not have to worry about inconveniencing anyone or worrying when they might already have plans.  When I drove myself to the hospital for my second visit today, I turned up the radio, sang at the top of my lungs, and released some of that stress that has been harboring itself up for the past six weeks.  It was a relief to be able to feel in control of something...for once.

Oh...and I guess I can't leave a blog without a cute pic or two...so here's one of my girl today, right before she ate almost half of her bottle.  No matter how long our journey might be, I'm so proud and thankful for her.  She really is my hero, my Madi Grace.

Wednesday 7/26

What day is it again?  I checked my phone three times before updating both the day of the week and the date for this post.  Time seems to be moving so fast and so slow at the same time.  Here's an update on our sweet girl...

Madelynn is continuing to improve and we continue to be amazed by her strength.  Two days ago (I think, at this point don't judge me if it was ten minutes ago) she had a pretty scary test performed.  She had to do a brain scan, which apparently is routine for premies at one week of age.  This test identifies if there has been any bleeding in the brain since birth.  Since it is standard, it is very common for premie newborns to have these brain bleeds.  The treatment and path forward depends on the severity of the bleed and if it impacts future development.  I was so relieved when our doctor told us that Madi has no signs of bleeding in the brain. 

In celebration of this wonderful news (and because he could of course), Jason participated in his first kangaroo time.  Brady, Jason and I went in to see her, changed her diaper, checked her temperature, and he got into his gown.  It melted my heart to watch him hold his sweet girl for the first time.  Brady and I gave them some time alone and went into the waiting room.  An hour later Jason had a perma-grin plastered on his face as he came to meet us.  It was the most adorable thing since adorable things, see?

Another significant milestone...Madelynn was taken completely off of oxygen today.  I got to watch the respiratory therapist take it off, and she was not having any part of it!  Apparently when they had put on the cannula, they placed it in her hairline, so as they took that off she was crying her little head off...you heard that right.  Crying.  We can hear her cry now, although it sounds more like the cutest little squeal.  I love that little squeal.  And...we can see her face!  The only tube remaining on her face is  her feeding tube.

Yesterday they also started dressing her in clothes.  This is a step toward of taking her out of her incubator and into an open crib.  We aren't sure on the timing of that as she will need to be regulating her own temperature at that point, but we are headed in the right direction!  Plus, she looks super cute in premie clothes.

Tomorrow Madi is 33 weeks gestational age which means we get to start the journey of nursing.  They have prepared us that this could be a long process.  The lactation consultant told me that most newborns struggle a bit to get it down, and this process could take as long as a month to get down.  I'm hopeful, and am at this point at least excited to get to try.  This next step, as with any of the steps is a part of the process.  She may move forward, she may move backward, but the process will eventually get us to the destination of home.

It is truly incredible the amount of progress Madelynn has made in the past 10 days.  It is hard to believe that 10 days ago she was struggling so much in the womb.  I almost hate to look at her pictures that the nurse took right after birth.  She looks so...lethargic.  She looks so...limp.  She looks so...unresponsive.

(picture right after birth)

This is not the Madelynn Grace that I know today, only ten days later.  Today, she is...a fighter.  Today she is...strong.  Today she is...active.  The nurses joke that she earns the "mad" in "Madi" and has no problem letting you know when she's upset.  Today I am so grateful that the only issue we've identified post birth is immaturity.  She's dominating her milestones and I couldn't be prouder.

Madelynn's Birth Story

A week ago today, Madelynn Grace Pyka entered the world at 8:02 am weighing 3 lbs 1 oz of perfection.  Here is her story...

We had anxiously been awaiting the arrival of our baby girl.  All of our t's were crossed, and all of our i's were dotted.  We had our hospital bags packed for weeks.  In the middle of the night, I woke up when my water broke.  I looked over at my husband who was in a deep slumber and said "Babe, it's time."  He shot up out of bed in a panic, called the grandparents who were on hold to come get Brady, threw our belongings in the car, and helped me get into the car to head for our completely natural, dolphin assisted water birthing center where I would deliver her after only a push and a half with no medication and earn my medal for record timing for a VBAC.

Wait...just kidding.  That's textbook.  We are the Pyka's, have you met us?  Nothing in our lives so far has been textbook.  We are messy.  We are real.  Life is chaotic.  Life is crazy.  Madelynn's birth story was no different.

So here's the real story...

On Thursday morning, my husband woke me up insanely early to ask me one more time.  "Are you sure it's ok if I go?  I can stay if you need me to."  "It's fine babe.  I'm fine.  We will be fine.  Go, you need this time with your friends."  You see, Jason goes on one trip per year with his closest guy friends to Louisiana.  They have a grand old time reminiscing their glory days, playing golf, gambling, and acting like men children, and they love it.  Jason doesn't spend a lot of time with friends, but this annual event is something he always looks forward to.  I happened to have been on bed rest for a few weeks from high blood pressure, but at every appointment, they had just sent me home for continued monitoring with no action needed.

On Friday, I had a follow up appointment with my doctor as well as a meeting with a specialist.  I had also been diagnosed with gestational diabetes the week before, and needed to follow a very specific diet to balance sugars.  This was all new to me, and felt like a punch in the gut, but I followed through and met with the specialist and then the doctor that day.  I picked up my glucose meter and began pricking my finger, testing my blood sugars in between testing my blood pressure at home.  I got a sonogram at the doctor's office, and my baby was given an A+ and I was sent my merry little way, back to bed rest, back to finger pricking and monitoring.

Saturday was my first full day of finger pricking, and all of my sugar levels were completely normal.  I had been prepared that they would be crazy, that it would take time to adjust, and to not get bummed or depressed.  But they were 100% normal.  I was resting, laying down all day.  Jason had planned for one of my mothers-in-law to be here and she was taking care of Brady and I both.  Everything seemed to be going completely normal.

When it was time for bed on Saturday night, I gave Brady a kiss, said goodnight, and he went upstairs to go to bed.  I ran to the bathroom really quick before I settled in for the night and noticed something a little off.  There was the tiniest amount of blood when I went to the bathroom, but I knew that any blood in the third trimester was cause for concern.  I first called Paula (my mother in law, who was upstairs) and asked if I should even bother calling the doctor this late.  She encouraged me to do so, so I did and talked to the on-call doctor.  "Are you having contractions?" "No." "How far along are you?" "31 weeks as of Thursday."  "When's the last time you've felt the baby move?" "Hmm...good question.  I think she hiccupped earlier today?"  "You've only felt her hiccup today?"  "Well, I think so.  She's sometimes super active and sometimes not, so that's normal right?"  "You had me until no movement.  Go ahead and come in to L&D just to get all checked out.  You probably just have a UTI, but it's better to be safe than sorry."

I called Paula (who was still upstairs) and let her know we needed to go in.  I grabbed what I thought was a hospital bag and threw it in the car.  We had been to L&D twice in the past couple of weeks to monitor for blood pressure, so I figured all would be the same.  Go in, get checked out, monitor for a couple hours, go home, go to bed.  At least that's what had happened so far.  "Should we call Jason?" I asked.  "Let's wait until we know if it's an emergency, we will call him at the hospital" Paula said.  I agreed, but started to get anxious.  We both knew at this time of night, the boys were likely three drinks in at least and were at the craps table.

When we got there everything started as usual.  Pee in this cup, take some blood, get in this gown, put this monitor on baby, this monitor on you, and this one monitors contractions.  The baby's heart rate seemed fine and after 20 minutes, results came back that I did not have a UTI.  Perfect!  We just needed to wait a little bit longer for a sonographer to come in and check for movement.  We called Jason just to give him an update, and he started panicking.

When the sonographer came in, the mood changed.  She started throwing out big medical terms...biophysical profile, scoring results being really low, high risk MFM, and other things.  The nurse came in and we all watched her in silence.  She had 30 minutes to test movement in the baby, and staring at the screen, clearly the baby was not moving.  The nurse sat there in silence and watched the screen, and glanced back and forth to the heart rate.  I stared at the screen and started shaking.  The sonographer said nothing, while intermittently saying "Come on, move....move please" to the screen.  Tears started streaming down my face.  I looked at Paula, and she had already picked up her phone.  She called all of my family and Jason's family, and I think she talked to Jason.  I didn't know what was happening, but I knew it was bad. 

After the sonogram the nurse said they were going to go ahead and call in the doctor who was on call just to take a look.  "Shouldn't we at least call my doctor?"  "No, she is the on-call for your doctor's office, she has access to all your records and information."  She was there shortly after and wanted to repeat the biophysical profile and sono because something didn't add up.  The baby's heart rate seemed fine.  She repeated the test, and after pushing super hard on my belly, she got the baby to move.  Relief.  By this time, my sister, my mom, and Paula were all in the room.  We all sighed as the doctor said "I see no need to deliver this baby tonight, but you will be here for a while for monitoring.  I will come check on you in the morning."  They then gave me a shot of steroids to help jump start Madi's lungs just in case we ended up delivering early.  They said it would be 24 hours, then they'd give me another shot, allowing the lungs to mature quickly.  I called Jason who was hysterical at this point.  "I'll come tonight, I'll leave now." "Please, Jason, please don't.  Please wait until tomorrow.  They said they aren't even checking on me again until the morning."  He and I were both crying at this point.  I needed him there so badly, he's my rock in these situations, but we both knew it would be safer for him to leave in the morning.

I sent everyone home with anticipation that we wouldn't have any new news until the next day.  My mom refused to leave thankfully, and fell asleep on the couch meant for expectant fathers to be.  I layed there, lying on my back, still shaking, staring at the ceiling, wondering what could be causing any of this. 

Within the next hour, more and more people kept coming in the room.  The nurses usually monitor everything from their stations just outside the rooms, but my nurse had come in and was sitting next to the monitors, circling something on paper every few minutes.  She was staring down, I was staring at her, but there was complete silence.  I finally asked if the heart rate was still ok, and she said it appeared to be having some problems but that would be a great question to ask the doctor.  I told her I was only 31 weeks, and asked how the baby would do if born early.  "That's a great question to ask the doctor."  But she moved...why is all this doing this?  "That's a great question to ask the doctor.  She's on her way back here now."

At this point, it was around 4am.  I called Jason in tears.  I told him to plan on getting on the road as soon as possible because I didn't know what was happening.  He said he'd be on the road by 5...and should be to the hospital around 11am.  I looked down at my phone and realized it was down to 5% battery remaining.  I left my hospital bag in the car, which was now at home, and I had no charger.  I had no husband, didn't have my doctor, and now no method of communication.

The doctor came back in, and let my mom and I know she had some concerns with the baby's heart rate.  It kept dropping, but it would recover.  I wasn't having contractions, so she said it was odd.  She brought a high risk doctor in with her who repeated a third biophysical profile.  She didn't move for the entire 30 minutes and he gave her a low score for her well being.  He looked at me directly and very calmly told me "There are cases in which the baby is better on the outside than on the inside.  I only recommend birth if necessary at 31 weeks, but something is clearly wrong with her environment and she is under stress.  We need to deliver this baby as soon as possible." "Ok" I said, trembling and reaching for my phone to call Jason.  "Can we please wait just 5 hours?  Please?"  "At this point, I'm so sorry, we need to get in as soon as possible." 

I called Jason and delivered the news.  I didn't know how why or what was happening, I just knew my rock was in another state and I needed him in mine.  I needed him with me to make me stop shaking.  To tell me it was going to be ok and that we'd get through this together.  I'm so thankful my mom decided to stay, but I'm not sure if she knew what she was getting herself into.  Before long, she was suiting up, getting ready to go into the OR with me, holding my hand, and praying for me as I just laid there, crying.

In the OR, I had the most wonderful nurses and the on-call doctor ended up being fantastic.  They tried to cheer me up, telling me that 31 weeks the baby had a great chance of survival.  I told them I didn't have a camera and I started crying harder.  They told me they could use my phone to take some pictures for me and I started crying harder when I told them my phone was dead.  My anesthesiologist gave me an epidural and came up with a great idea.  She would call Jason and ask him to pull over and see if she could face time the birth with him, so that he would still be the first one to see his baby girl.  She tried, and they called back and forth a few times, but he was in too rural of a place to be able to get a signal.  She assured me it would be ok, and she took out her cell phone and took pictures of the baby, and texted them immediately to him and me.

Madelynn Grace Pyka made her appearance at 8:02 am with her Grammy in the room comforting me.  She didn't cry.  I didn't hear her cry.  She couldn't breathe.  The room was silent and full of medical staff.  The NICU team immediately started putting in a ventilator and gave her an APGAR score of 2/10.  Once they had that in, they brought her to me for a split second but I couldn't really turn enough to see her face.  They then took her to the NICU. 
  
Dr. Trylovich (the on-call doctor) came to my side and encouraged me that I did the right thing and handled everything with "strength and grace." I just said thank you and kept crying.

A nurse came by and also re-assured me, saying when they pulled her out, her cord was wrapped around her neck pretty tightly...twice.  They had also sent off my placenta for pathology because it didn't seem right.  They assured me that medical intervention would help her so much, that she would be so much better soon.

At the end of the week, the pathology reports came back.  My placenta had abrupted and Madi wasn't getting any oxygen that she needed.   Plus the cord was wrapped around her neck.  If I hadn't gone to the hospital that night, Madelynn Grace would not have been with us anymore.  God had a plan the whole time.

Jason arrived around 11:30am while I was in recovery.  He came in, held my hand, hugged me, and we both cried.

Saturday 7/22/17

This week has been full of so many emotions.  From surgery to recovery to leaving the hospital empty handed, I have been a complete mess.  I truly am thankful for all the support we have been given and I appreciate every text, phone call, and message.  Forgive me if I haven't updated everyone in a timely manner on things.

I started this blog in an effort to streamline the communication and make things as efficient as possible so I can maintain some level of control (Hi my name is Elaina and I've got lots of problems and control is one of them).  Most of what is going on now has to do with Madelynn and I, but as I move forward this blog will be used to update everyone on all the chaos that is #pykalife.

I'll post more details on Madi's birth tomorrow when I have enough time to gather my thoughts.  I want to make sure I tell her birth story in a way that encompasses all the feelings Jason and I had, so that will take some time to think through.  Today, however, was the BEST DAY and there were several good updates that I will leave you with for now.

Today, Madelynn was weaned off of the CPAP to a "regular" oxygen cannula in her nose.  She has been weaned from the ventilator to the CPAP, and now to the oxygen cannula.  All of this is very good progress.  She is breathing on her own now, and they almost went directly from CPAP to "room air."   Her bilirubin levels are also back to a normal range so they have taken off the phototherapy light.  So basically, in the span of 24 hours she went from looking like this

To This...

Isn't she super cute?  Yeah, we thought so too.  It's nice to be able to see some of her features without all the wires and machines.  Also - side note - taking pictures in the NICU is relatively impossible.  You have to keep everything sterile, so most of the time pictures are taken through a plastic Ziploc bag on your phone...I have been craving a picture of me and my sweet girl so badly.  But, I digress.

 

The GREATEST part about today...the greatest part of all of the days so far...I GOT TO HOLD HER for the first time.  When they handed her to me, of course the waterworks came flowing like Niagra Falls.  All of the anxiety, all of the fear, all of the times that I tried to hold them back and keep strong because that's what good parents do for their children...all of them came out...streaming down tears of relief, tears of joy, tears of thankfulness.  I finally had my baby in my arms.

I will get to hold her for one feeding per day for now, and although they say she benefits greatly from it, I'm sure I benefitted more today.  I'm so thankful for this precious life we were entrusted with.  Today was one of the happiest days of my life.  I got to hold my baby girl.