Happy Birthday Adalyn!

Two years ago today began a 117 day journey that will forever be a part of our lives

1lb 13oz, and 13.3" long, covered in plastic to keep her warm the very first day

Kept in an isolette to keep her body temperature constant, and sickness out

Bright red skin, an eye patch, and phototherapy for Jaundice

CPAP in her nose; feeding tube down her throat; pulse oximeter on her hand or foot; temperature sensor; IVs in her hand/arms/feet/legs, electrodes to measure heart-rate, respiration, and blood pressure



IVs were changed every 2-3 days, she was poked and prodded sometimes for an hour as they tried to find a vein in her tiny arms and legs;  they were all used up, and they told me they might have to use her head.  A PICC line was inserted instead, an infection resulted, but the doctor caught it immediately

Her little body working so hard to keep warm, take poops, and survive out of the womb, that weight gain (and loss) was measured in grams/ounces, and it took a full month to gain 3 ounces!

Held for the first time at 4 days old, eyes fused shut for 5 days

Her eyes were black; her skin was so fragile and translucent you could see the 4 sections of her heart and everytime it beat; her ears had no cartilage and needed to be folded back to form a natural shape

She had hair all over her body, including her face; over the first month, we watched her eyebrows form as the hair became less and less

Glucose measured for weeks to track her spikes; feedings adjusted to not disrupt her little body and prevent serious illness.

I learned to advocate for her, learned the terms of the NICU, all the tubes and controls on the monitor, all of the nurses' names; I learned to pick her up by myself, we learned to take her temperature and change her diaper.

CPAP was taken out around 2 weeks old and she breathed on her own for a full 10 hours!  When she began de-satting, she was put back on low-flow O2.  She had trouble breathing, remembering to breathe, and had no energy to do so; a nurse spent an hour with her just concentrating on getting her to breathe.  She was put back on CPAP.

I learned the monitor's beeps.  The slow rhythmic beeping that her O2 was low but okay, the faster beep meaning that an electrode was probably loose, and the important beep that jumped you out of your chair to make sure she brought her pulse back up again.  The hoping that you'll eventually get that noise out of your head when you sleep at night, and you'll be able to live without that noise assuring you that your baby is okay.  Hearing the most important monitor sound of all down the hall, and having your own heart drop seeing all the nurses sprint to the room.  Seeing a family member hear the intercom at a grocery store go off and instantly looking around reminding themselves they're not in the NICU.

She eventually made it from 2lbs to 3, and it became more steady from there; we started seeing progress instead of worrying every day; she was old enough to put the feeding tube down her nose instead of in her mouth

We went from needing permission once a week to hold her, to being able to take her out twice a day, to only needing to mention to the nurses that I was going to take her out.



Her eye exam came and I was told that I might want to leave the room.  The eye doctor had clips formed for the little preemies' eyes to hold them open.  Ady screamed, but only for a minute.  It was the biggest scream I had ever heard come out of her little mouth.

She was big enough to wear her first onesie; she was stable enough to graduate from the NICU to the CCN; she could maintain her body temperature and graduated from her isolette to a bassinet, to an open crib; I could hold her whenever I wanted; we started bottle feeding; she got her first bath; her grandparents held her for the first time; she stopped needing O2; we took her off of her monitor for the first time; I learned to live without the monitor, and started to trust myself; she got a barium swallow x-ray to detect reflux issues; we tried rice cereal and different bottles/positions; her due date came and went; she got a brain MRI; she passed her carseat test; we worked with the doctor on adjusting her feedings, and the doctor trusted me; it took 5 weeks for her to learn how to feed, but Ady finally ate what she needed, and we went home on October 10, 2012.

June 16 may have began the 117 day journey in the NICU; but October 10 began our journey at home, and raising a little girl.

She was 9lbs 2oz the day she was discharged from the hospital.  A few days later for her first doctor's appointment, she was 9lbs.  I panicked a little, thinking we were going to have to go back to the NICU.  The doctor scheduled another appointment for the next week, and she weighed 9lbs 4oz, and he wasn't worried.  She started smiling, holding her head up, holding her own bottle; She started noticing things around her, like her toys, the cat and dog, and the people.  She would follow us with her head/eyes as we walked around, heard us before we entered the room. 
She still hated eating, and we tried several bottles and I finally found one that she would use without problems.  She started enjoying her bottles, and I was so relieved I almost cried.  We checked off her milestones, one by one; some of them were a little late, but  some of them were really early.  I started relaxing when she learned to roll over, and to sit up.  She was going to be fine! 
She's a little climber; she started to climb up people, chairs, couches, anything she could pull up on before she could crawl! 
It took a little longer for her to learn how to walk; she was 14 months adjusted, but she did it!  She started learning words, peoples' names, and then she started learning and making sense!  She knew Chloe was a dog, but she also knew Chloe was her name.  She knows which door to go to when she wants to give Chloe a snack, when she wants to go get the mail, to go get Nana, to go to the bathroom, or to go to sleep. 
We really enjoy her temper tantrums as well.  I used to not be able to deal with her whining when she was a baby, or her temper tantrums when she was 1.  Now though, she's starting to understand me; I know that she knows I want her to stop crying when I say "look at me", so if she continues to have a fit, well than that's her issue!  We have learned that "all done" or "all gone" helps prevent her from having a tantrum if something is taken away, and that "byebye" helps when she needs to stop something, like playing on the slide or in the pool.
She knows that "row row" (row your boat) is the song we sing when we brush her teeth; she knows poo and pee, but she's not ready for the potty yet; she knows please, thank you, excuse me, and bless me; she has a 9-11pm bedtime because she doesn't want to slow down, and she wants everybody possible around her when she's going to sleep.
We have learned her personality, and we make adjustments to try to help her; the little 1lb 13oz baby is 2 years old, and she knows what she wants when she wants it!  It's been quite the journey so far, and we have a ways to go with her prematurity and possible learning disabilities, but I've learned to let go and try not to worry; we have her now in this stage, and it's fun, and time for us to enjoy her tantrums because we have come so far from those 117 days!  Happy 2nd birthday, Adalyn!!

March for Babies

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Please consider donating!!!

What is a NICU? I had no clue

Dear Pregnant Me:

A year and a half ago, February, 2012, you just found out you were 5-6 weeks pregnant.  You were scared, nervous, sad, happy, excited, and nervous all over again.  You’re a naturally paranoid person, so your first online search wasn’t for “what the baby needs” or “what to expect in the first trimester”, it was “what can go wrong during child birth?”  

Here are some things a NICU mom wishes she knew:

      1)      It is not what can go wrong during child birth, it’s what can go wrong during a pregnancy

  Pre-Eclampsia

  HELLP

  Placental Abruption

  Miscarriage

  Stillborn

      2)      How can I prevent a premature birth

   You can’t!

      3)      What is a NICU

   Neonatal Intensive Care Unit; specialty care pediatric units, usually for premature babies, and   sometimes for full-term babies with issues. Go take a tour

      4)      How early can a baby be born and survive

   Earliest one known is 22 weeks

      5)      What kind of life will this baby lead if they are born ___ early

   You never know!  They can be perfectly healthy, or they can have brain bleeds, CP, rely on O2, etc.

   
      6)      What will the baby look like

   Depending on how early, your baby may have a transparent layer of “skin”; you will be able to see   the heart beating, and the veins under the skin.  He or she may have hair all over their face, no lips, and their ears will have no cartilage

      7)      What will the baby act like

   They will sleep on their back, on their bellies, with their arms up, and down.. they will move all around, or be very still.  They will try and open their eyes, which will be completely black; they will open and close their hands, yawn, cry, and feel pain

      8)      What will be expected of me

   Nothing will be expected.  The nurses will offer if you want to take the baby’s temperature, change their diaper, hold a hand over the baby to calm them down; you will learn all of the ticks and beeps, all of the machines, and all of the numbers, but in your own time.  They will ask if you want to hold them, and then tell you that today is not a good day for them to be held.  You are expected to be strong, you’re expected to cry.

      9)      Will I be strong

   And for how long will I remain strong?  Am I not normal if I don’t cry?  I got upset once a week or 2 after my daughter was born when she was crying, and I couldn’t do anything to help her.  I was mad at myself for doing this to her, and I just wanted to go home.

      10)   How long is the average stay for a baby born ___ early

  Mine was 117 days.  Some are 100 days, some are 6 months.  Some are born at 28 weeks, and leave 4-5 weeks later!

      11)   Where will I live during this time

   Check with your hospital social worker; there may be a Ronald McDonald nearby, you may be able to stay in the NICU if there are individual rooms for your babies, or you might have to travel back and forth

   
      12)   How much will it cost

  Thousands of dollars each day.  Check with your social worker for any programs to help, such as SSI, your local insurance (MaineCare for me), WIC programs, etc.

      13)   What kinds of surgeries might this baby need

   They might need heart surgery, brain surgery, eye surgery, or none at all

      14)   What are all of the IVs sticking out my baby’s hand, arm, foot, head…

   The IVs are feeding your baby with necessary fluids for them to survive.  An IV can only last for 2-3 days, so they will need to restick your baby’s arm, leg, or even head, every time.  Sometimes, a PICC line is used instead, which can last weeks instead of days.

      15)   What are these instruments/tools called, and used for

   Pulse, Oxygen, Respiratory, IV, CPAP, etc…  wires, tubes, nasal cannulas, and more wires

  
      16)   What do these buzzing alarms mean, and will I ever get used to them

   Each notification has a different tone.  Beep beep, your baby’s oxygen or respiratory lead has come off, it needs to be fixed, but don’t panic; look at your baby, she is fine.  BEEP, your baby has dipped in respiratory levels but most likely just forgot to breathe for a few seconds; it should start coming back up any time soon.  BEEP BEEP BEEP, ok she still is forgetting to breathe, somebody remind her.

   
      17)   When the nurses don’t come running when one of those alarms go off, can I freak out

   The nurses know what they are doing.  If an alarm goes off and it’s important, they will be there.

      18)   Is it ok to take a break, go for a walk, go to the beach, go home…

   YES

      19)   What types of questions should I ask the doctors and nurses

   Anything.  They are there for you and your baby.

20)  The one that I still struggle with... should I work?
    I didn't, and I wish I did.. at least part time.  That's a lot of money to make up/lose, and a lot of bills still to be paid every month.  But, some people did work and they wish they hadn't.  They wanted to be at the hospital with their baby.  Make the choice that is best for you, and don't let anybody make you feel bad about it.

Crossfit Pregnant mom Commentors 2

On a side note, not relating to losing babies
1) Mind your own business
2) Stop feeling SO free to judge other people, especially other women's pregnancies
3) You are not a doctor
4) She was 8.5 months pregnant, obviously has had a successful healthy pregnancy, so far, and had 2 prior to this as well.  I think she knows what she's doing, and so do HER doctors.
5) Women who are in shape, weight-lifters, athletes, etc.. are very aware of their body, their abilities, limitations, and ANY changes that they feel relating to their health
6) Yeah, mind your own business again.. unless it's a cocaine using, cigarette smoking pregnant mom- then feel free!!


To Crossfit Pregnant Mom Commentors

To Crossfit "pregnant mom" Commentors

"“This is why CrossFit is horrible. No one knows what they're doing. This is a good way to lose your baby,” wrote Facebook user Evan Kennedy, a physical therapist."
Source: http://shine.yahoo.com/healthy-living/should-pregnant-women-be-weightlifting---200459884.html


1) I did NOT exercise when I was pregnant
2) I almost lost my baby


The End


On a Side Note.... Crossfit Pregnant Mom Commentors 2


Refer to the following posts to observe my 23 week premature baby that I had while not working out:
Adalyn's 1st Year Video
Life in the NICU/CCN

Happy 1st Birthday, Adalyn!

Allowing Kids to be Kids

A few years ago, my mom and I were at a performance (I’m not sure what, exactly), and there were some kids running up and down the aisles.  They were probably no older than 5 years old, laughing and playing around in-between shows.  Everybody around us was happily enjoying them, and there were no parents telling them to sit down or to “shh!”  My mom mentioned how when I was younger, she wishes that she would have let me do that.  To let kids be kids is one of the hardest struggles a parent might face in a public place.

On a visit to an appointment a couple weeks ago, there was a little boy walking around and playing quietly, not bothering the only 2 other people in the room.  His mother told him to sit down and stop making so much noise.  He did.  Then, he and his brother started telling jokes and messing around in their chairs.  She told them a little bit louder to sit down and be quiet.  Saying “shh” over and over again, is louder and more annoying than a kid laughing and playing around.  And many people agree with me on this when we’re out in places and it happens.  My daughter is still a baby, so I don’t know how I’ll react to her when she’s older in this type of situation, but I hope that I allow her to act her age and be silly as long as she’s not being rude.  They’re kids, they know silliness and happiness.  Stress, being rude, still, quiet, and stripped of their fun and innocence is worse to me than a 4 year old standing up and playing in her chair during previews at a theater.