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Friday, June 15, 2012

We Want a Chunky Baby!


Well evidently the cardiologist didn't scare Caroline enough because we are currently at the hospital and Caroline now has an NG feeding tube. 



On Tuesday we had an 8:30am cardiologist appointment.  We went through the normal procedure of a weight check, length check, EKG, pulse ox, and temperature.  When the cardiologist came in he said well we haven't gained weight again.  I think its time for the tube.  I had no idea what he was saying at first.  Then I realized, oh great a feeding tube, the hospital, yay. So Caroline and I went home, I packed our bags, and we headed off to the hospital.  We had a choice of hospitals in the area so I chose St. Mary's, where Caroline and Emily were delivered.  

Philip was in Baltimore again this week but he was able to take a train back to Richmond Tuesday night.  I also asked my mother-in-law to come be with me.  My parents offered to come too but I told them no for now.  I figure we will need to rotate the support system over the coming weeks/months.  

We checked into the hospital around lunch time Tuesday.  We started by answering lots of questions and getting her vitals monitored.  She has a hospital pediatrician, medical students, nutritionist, GI specialist, nurses, techs, her normal pediatrician, and her normal cardiologist.  We've had to repeat her medical history/feeding history to all of them so I will repeat it here too so we are all on the same page :)

Caroline was born at 6 pounds 7 ounces.  As all babies do she lost about 10 ounces after birth while at the hospital.  She was able to surpass her original birth weight by 11 days old which was great.  So at 11 days old she weighed about 6 pounds 11 ounces.  From April 11 (11 days old) to May 18 Caroline gained ZERO weight.  Over those six weeks we put her on two medicines for her heart and slowly upped them as the weeks progressed.  We clothed her in socks, a onesie, footie pjs, and a hat 24/7 so she wouldn't burn calories trying to regulate her body temperature.  We also switched her feeding around.  For the first month or so I nursed her.  Then we added 2 formula bottles a day.  Then we alternated nursing and formula bottles. On May 12th we decided to switch her to an all formula diet.  This all formula diet was also a formula that had higher calories in it than normal formula.  The combination of a high calorie all formula diet, her layered clothing, and her 2 medicines made it so when we did her weight check on May 18th she weighed 7 pounds 6 ounces. It took her six weeks but she finally gained weight!  We were given permission to stop the layered clothing but continued with the medicines and the calorie rich formula.  Then on June 1 she had got up to 8 pounds!  We thought we were rockin' and rollin' in the weight department.  Well on Tuesday when I took her in to the cardiologist she had gained no weight again :(  Basically we have exhausted all non invasive methods to help her gain weight so the cardiologist decided that we needed to admit her to the hospital to get an NG tube (Nasogastric feeding tube) to help her gain weight.  An NG tube is a tube that goes through the nose, down the throat, and directly into the stomach.  

Why is she not gaining weight?
The hardest thing for a baby to do is to eat.  Caroline gets worn out during her feedings and doesn't eat as much as she needs too.  It is extra hard for her because of the hole in her heart.  She is burning all the calories she does take in just to stay alive.  The doctor told us that she needs to eat more than a normal baby her age because she burns her calories so quickly.  Right now she is eating less than a normal baby her age.

What are we doing to help her gain weight?
We've changed "the plan" about a million times while here at the hospital.  Here is "the plan" as of 4pm on 6/14.  Caroline is getting fed her high calorie formula during the day through a bottle.  We are starting out with about 2 oz every 3 hours 4 times a day.  Then at night she is having a slow continuous drip.  So from 7pm to 7am Caroline's tube will be hooked up to a bag (looks like a IV bag) that has her food in it.  She will be getting continually fed all night long through the tube.  She will be getting 30mL an hour for 12 hours or about 1 oz an hour for 12 hours.  The doctors want her to get a total of 600mL a day.  In a few weeks we will increase this.  We are continuing with bottle feeds during the day in order to make this as normal as possible and to make sure she remembers how to suck and swallow so we won't have to reteach her later.  

How are all of us doing?
Philip and I are doing well.  We knew there was a chance of this so we weren't taken totally by surprise.  It was hard to have Phil in Baltimore on Tuesday.  I was so happy (and so was he) when he got here late Tuesday night.  He has been able to work in his company's office the past couple of days instead of the client in Baltimore.  We were both upset at first about the tube but are just rolling with it now.  We've gotten used to that this past year ;) I've stayed at the hospital every night.  Phil and his mom have stayed at our house.  They both offered to stay with me or for me but I just don't want to leave her.  I finally left the hospital for a bit Thursday night for dinner with Phil's mom while Phil stayed with Caroline.  

Caroline is doing okay.  When we first got to the hospital on Tuesday she was soooooo happy. She was playing with her toys, smiling, and loving the attention.  When they put the tube in on Tuesday evening she was just laying there smiling and laughing at me.  It was so sad because she went from being so happy to screaming and I mean screaming.  It was horrible. I just stood there singing lullabies to her, telling her how proud we are of her, and how proud she should be of herself.  I also had to help hold her down :(  I've never heard my baby cry like she did when they put that tube in.  It took me awhile to calm her down afterward.  We had some difficulty with that first tube.  The machine kept saying that it was blocked.  They had to re-adjust the line multiple times throughout the night because they couldn't figure out what was wrong.  Every time they did that she started a new batch of screaming.  They also had to use a cathader to get a urine sample.  Luckily she didn't cry for that!  They also wanted to run bloodwork.  They had to stick her 5 times because they couldn't get any blood.    Over the course of Tuesday night they stuck her 4 times, cathed her, and readjusted her tube (probably 2-4 times).  It felt like we were waking her up every hour from 8pm until 3 am.  Then at 3am they decided to put in a new NG tube.  By that time I couldn't  take it anymore.  I had held her down over and over again and tried to keep her calm as the nursing staff did what they needed to do.  I sat down in the chair and put my head in my hands and tried to keep from crying.  I knew if I cried it would just make things worse for Caroline.  I told the nurses that I wasn't going to stay while they took out the bad NG tube and put in a new one.  I just couldn't do it anymore.  I stood over Caroline crying a little and apologizing to her for leaving while they dealt with the tube.  I almost changed my mind and stayed.  I felt sooooooo guilty for leaving her.  In the end I knew what was best for my exhausted emotions was to go for a walk.  When I came back they had just finished taping the tube down so I picked her up and snuggled her for a long time.  Wednesday was easier because we didn't have to deal with a problematic tube.  They did have to stick her one last time to get blood (they brought in an "expert" this time).  Thursday has been the best day so far.  She is starting to get used to the tube.  The saddest thing is when she wakes up in the morning.  She used to be my happy, smiling baby (see pictures) but now she wakes up crying, coughing, and sneezing--trying to get used to that darn tube.  We have started getting more smiles which make us feel better about the whole situation.  

2 weeks ago this is what greeted me when I went to do her morning feeding.  

The staff at St. Mary's has been wonderful.  We have liked every experience we've had here between Emily's delivery, Caroline's birth, and this we feel like we know the place pretty well.  It is weird that we aren't in Labor and Delivery.  I associate this hospital so much with Emily that it is weird to have a whole new experience (I don't really associate the hospital with Caroline's birth...I guess because it all happened so quickly).  Actually I kinda miss the labor and delivery wing! 

Caroline's cardiologist visited her to Tuesday evening right after she got the tube.  I talked with Caroline's pediatrician on the phone every day and on Thursday she came in on her day off to check on us.  She even gave me her personal cell phone number so I could text her updates.  I told Phil we can never ever move because there is no way we could find another pediatrician like Dr. D or an obgyn like Dr. Tyson.  Amazing doctors like them are hard to find.  We feel so blessed to have them in our lives.  

Still no word on when surgery will be.  They want to see consistent weight gain which shows she is strong.  The stronger she is the better she will tolerate surgery.  

Update:  It is now Friday morning (I've been writing this blog all week!) and Caroline has gained weight!!!!! When we came in on Tuesday she weighed 3.74 kg.  This morning she weighed 3.86 kg!  That is 1/4 of a pound in just a couple of days!!!! This is HUGE in our world :)  Also, she woke up smiling today instead of crying.  That makes for one happy Mommy and Daddy. We should be getting discharged today.  We have to wait to get taught from the medical supply company how to use their equipment.  We will also be having an in-home nurse come by our home to check on us.  I'm not sure how often the nurse will be coming by. 

I wish ya'll could see Caroline.  She is such a happy baby, a great snuggler, and has the craziest hair you will ever see on an 11 week old (well she will be 11 weeks on Saturday).  She makes the cutest grunts and nastiest poops.  She is now obsessed with her own hair.  She likes to wiggle her fingers through it, to twirl it, and to grab it and hold on.  Her hair line is EXACTLY like Phil's.  She lays there twisting her hair when she is sleepy, which is what I did when I was little!  She really is the sweetest baby in the world (I'm not biased or anything).  

loving that hair!
A special thank you to Robin my mother-in-law.  She has sat with me at the hospital all week.  She has been wonderful company and support.  

Phil and I feel so incredibly blessed to have our amazing parents.  All four of them are so loving and supportive.  They are all obsessed with Caroline.  When we see them they love feeding her, diapering her, and especially snuggling with her.  They all are always itching to get their hands on her :)  All four of them take care of us too.  Seriously, we are so incredibly blessed.  Thank you Grandma Karen, Grandpa Jeff, ReRa, and Gran Dan the Magnificent! 

Love,
Megan

Being at the hospital is easy!
(This is before the tube was put in)

Hi ReRa

Bows make everything better!

yay toys!



hmmmm

Daddy is here!


Caroline LOVES her hair! She can't stop running her fingers through it and playing with it.

Two of our nurses.  Miss Abbey and Miss Susan.

We had a therapy dog come and visit us!
Caroline slept through the visit buy Mommy and ReRa loved it!
Look, Libbie the dog has a hospital ID!!!

New toy that the hospital let us borrow.  Caroline loves it!

Look who is getting used to her feeding tube!
Nice and relaxed and asleep.


Friday, June 1, 2012

Two Months!









  • Age: 2 months 1 day/8 weeks 6 days
  • Weight: 8 pounds!!!!!!!!!!!! (20th percentile)
  • Height:  21.75 inches (25th percentile)
  • Head Circumference:  14.75 (25th percentile)
  • Hair Color:  Brown
  • Eye Color: Grey blue (the doctor said this will change to her permanent color between 6 and 9 months)
  • Diaper Size:  Newborn (She was in preemie diapers for the first month)
  • Clothing Size:  0-3 (We just changed to this size 2 weeks ago.  Only some of her 0-3 clothes fit.  Some are still huge on her)
  • Nicknames:  Baby Girl, Darling, Little One, Baby Bear (Phil now refers to me as Mama Bear)
  • Expert Skills:  hiccupping, sneezing, pooping, stretching, eating, the pirate look (only opens one eye and looks at you questioningly), Elvis smile, rolling her tongue, tracking people, turning to voices, looking at toys, smiling, chewing on her hands when she is hungry to soothe herself
  • Developing Skills: Hitting her toys, cooing, holding head up in her seat, sticking her tongue out when we do
  • Likes:  Staring up at her toys, walks, her rock and play, Mommy making a squeaking noise, the bottle song, the sound effects we make when getting her dressed (choo choo noises when we put on socks)
  • Dislikes:  spitting up, reflux, her heart medicines, nightmares (she cries out and makes the saddest face and then is fine again), Mommy making a motorboat sound
  • Mommy's Favorite:  When she smiles, snuggles!
  • Daddy's Favorite:  When she smiles
  • Toys:  Mirrors, laying on her mat playing with hanging toys, Mommy and Daddy!
  • Sleep:  A 4 - 5 hour stint at night and a 3 hour stint.  We aren't allowed to let her go longer than 5 hours at night without a feeding.  During the day she was napping well but now she is mainly just doing cat naps.  
  • Feeding:  About 2 oz of formula every 2-3 hours.  Most feedings are taking about an hour.  

Caroline is becoming more and more interactive every day! She has an amazing attention span for a two month old.  She will lay there and play with her toys for a good 15-20 minutes!  She has recently started mimicking us when we stick out our tongue.  It also makes her smile.  She loves it when we talk to her or make noises.  She has started making more noises herself so we make sure to mimic her when she does in order to help encourage her.  

We had our first trip out of town when we went to a wedding in Charlottesville (congrats Steve and Ellen!).  Phil's parents babysat her at a hotel while we had a fabulous time with a ton of Phil's fraternity brothers.  We ended coming back home that night and not spending the night at the hotel.  It was a great first date night out!

Caroline had her first trip to Colonial Beach over Memorial Day.  We were so excited to introduce her to this family tradition.  I will have to upload photos of it at a later date.  


She and I spend most days hanging out, giving her a bath, playing with toys, going on walks, reading books, and eating.  Lots and lots of eating.








  • Medications:  3!  Two for her heart and 1 for reflux
  • Food:  Nutramigen i.e. super expensive formula---also we mix more formula per water in order to increase the calorie count
  • Appetite:  She is eating about 2 oz at a feeding now.  That is new.  Until about a week ago we were lucky if she ate 1-1.5 oz.  (Normally babies are eating 4-5oz by this age).  
  • Vaccines:  modified schedule due to her weight 
Caroline has FINALLY gained some weight.  From April 11-May 18 she gained ZERO weight.  She was stuck at 6 lbs 11oz. for 6 weeks!   She wasn't gaining weight because of her heart.  The hole in her heart makes it so some blood gets circulated through multiple times, which makes it work harder, which makes her burn calories.  Feeding takes most of a baby's energy so eating exhausts her.  All this means difficulty gaining weight.  Well at her doctor appointment on May 18th she had finally gained weight.  She weighed 7lbs 6oz.  We were so excited that I started jumping up and down.  We also asked them to weigh her again on another scale just to make sure ;)  When we went to the doctor today she weighed 8 pounds!!!!  This is HUGE in our world :)


We think what helped her gain weight was increasing the heart medications she is on and switching to an all formula diet.  It was a very hard decision to stop nursing but it was best for her and for me.  I knew it wasn't my fault she wasn't gaining weight but it was making me very sad and frustrated.  It is much easier to have her not want to eat from a bottle than her not want to eat from me.  Another factor in her gaining weight was that I started reading Harry Potter to her.  We are already done with the first book and are a few chapters into book 2.  Clearly she has good literary taste :)  The last reason we think she gained weight is because the cardiologist scared the bageezus out of her.  At our May 11 appointment he mentioned the possibility of a temporary NG feeding tube if she continued to not gain weight.  This is a feeding tube that would go in through her nose, down her throat, and into her tummy.  Philip and I would have to feed her at night with a slow drip to help her gain weight.  If we used the feeding tube it would take the work out of eating for her and she would most likely gain weight. Well she clearly didn't want that feeding tube because she gained weight after the cardiologist's "threat" (though the feeding tube is still a possibility if she stops gaining again).  The cardiologist emphasizes that everything we are doing is only temporary.  It is all to get her to be the best candidate possible for the surgery.  So if it takes her an hour to eat, so be it.  If she wants to eat every hour, so be it.  Basically we feed her on demand all day.  We aren't allowed to do a feeding schedule.  We aren't allowed to have her go longer than 5 hours at night and 3 hours during the day without eating.  This usually isn't a problem but there have been a few nights where she wants to keep sleeping and we are just sticking a bottle in a sleeping baby's mouth and she eats while asleep.  Basically we are just stuffing that little baby with as much food as possible!  

As far as surgery goes we still do not know when it will be.  All the cardiologist has said is it will be sometime this summer.

Our newest issue is reflux.  She has been fussy because she doesn't feel well :(  Her fussiness is mainly her rubbing her head back and forth on our shoulder while we burp her.  We just sit there patting her back over and over again which helps stop her head rubbing.  We just started zantac so hopefully that will help.  We also bought a rock and play which keeps her elevated and soothed.  This week we started using a pacifier which seems to be helping the reflux as well.  At the appointments today the doctor said her fussiness could also be because of her age.  Evidently 6-8 week olds go through a fussy stage. 

The hardest part of all of this isn't the fact that she was having difficulty gaining weight.  We are actually quite relaxed about it most of the time.  We've both had our moments of worry but we know there is only so much we can do.  We are just trying to do the best we can.  The hardest part for us is the endless questions from others about her health.  While we know they are all out of love for us and for her they are quite draining.  We are trying to be relaxed about the whole thing but when everyone else is constantly asking when her next appointment will be, did she gain weight, when will she have surgery, etc. I start to lose my patience and start giving short answers because I don't want to talk about it.  I'd much rather talk about her cute noises, crazy hair, or funny noises/faces she makes when she poops.  I just want to focus on how amazing our daughter is rather than her heart condition.

We've been able to take her out to eat and to a store or two.  The doctors do not want us to have her outside very much, around crowds, by other kids, or operating machinery/driving a car (this is a warning on one of her medicines hahahahaha).  They told us if she gets sick she will have to be in the ICU because of her heart condition and low weight.  This has been hard for me because it limits who I can hang out with and when and where.  I have friends who are stay at home moms too but I can't have her around their kids.  Like the cardiologist keeps saying, this is all temporary.  I have been able to get out of the house some with her.  We go to doctor appointments, to Target, out to lunch or dinner, and on walks around the neighborhood.    


Phil and I are feeling really good about life right now.  We feel so blessed to have our amazing daughter.  Our favorite time is when the three of us get to hang out together.  This is especially true when she is awake and playing.  She is just so darn cute!  We have worked really hard to tackle parenting as a team and support each other when we feel challenged be it a scary spit-up or one of us is exhausted.  Overall we are feeling really confident.  Once we get one thing handled though we know a new challenge will always present itself, such is the nature of parenting right?


Our newest challenge is Phil's job.  His new client is in Baltimore.  When he got assigned to them we thought he would be working remotely from Richmond.  We just found out that he will be commuting to Baltimore every week for the next month or so.  He will be taking the train up on Monday mornings and come back on Thursday evenings.  We had our first taste of our new lifestyle this week.  The first day was really tough.  Caroline had a giant spit-up, an exploding poo all over herself and her carseat, and the dog acted up (more on that below).  My mother-in-law hung out with us the second day which was great!  Then the next day Phil came home.  Caroline and I started getting into a routine this past week as I became more comfortable being a single parent.  I think as I get more comfortable it will get easier.  It was really hard on Phil too.  He loves spending time with Caroline (and with me!).  We were able to facetime one another which was great!


Zach is still good around Caroline and likes her but the obsession with her has worn off.  When she started crying the other day he was sleeping.  Her crying woke him up so he looked up, turned toward her to see that she was crying, rolled his eyes, and lay back down.  I think we are dealing with a jealous doggie.  While Phil was gone this past week Zach decided to jump on the couch and pee on it.  Yes pee on our couch!  The thing is I had just taken both of them on a mile long walk!  So it's not like he is being ignored!  We've been working on giving him more attention since then.   

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Well I think that's it.  I will continue to only do monthly updates though I have a couple of funny quick posts planned about Caroline's hair and poop.  I tend to update the shutterfly photos more frequently.  They are a lot easier to deal with then this blog because writing posts takes me hours to do.  This one has taken me days to write!

Again, thank you for all the sweet messages, cards, and presents.  I haven't been able to respond to most messages but they are really appreciated.  It is really hard for me to sit down in front of a computer these days!

To see photos and video from May check out our shutterfly photo share site.  You need a password to view the pictures.  If you would like the password all you have to do is ask :) 


Our dear friend Julie who took the photos of Emily took a few photos of Caroline when she came to meet her at 2 weeks old.  You can view those photos here

Have a wonderful June!

Love,
Megan




Monday, April 30, 2012

4 Weeks Old!




Caroline is one month old today!  In order to make it easier for me I'm only going to do monthly updates from her on out unless we have "breaking news".  So here is her one month update!








All About Caroline


  • Age: 30 days/1 month/4 weeks 2 days
  • Weight: 6 lbs 12 oz.
  • Hair Color:  Brown
  • Eye Color: Grey (the doctor said this will change to her permanent color between 6 and 9 months)
  • Expert Skills:  hiccuping, sneezing, pooping, stretching, eating, the pirate look (only opens one eye and looks at you questioningly), Elvis smile, rolling her tongue
  • Developing Skills:  tracking people as they walk by, turning to people's voices, looking at toys, grabbing Mommy's hair, wiggling/army crawling across bed!
  • Likes:  moving her hands, pooping, sleeping on Mommy or Daddy's chest, getting a bath, getting her hair washed
  • Dislikes:  Her bassinet/pack-n-play, sunlight, the Prince song "1999"
  • Mommy's Favorite:  When Caroline and Mommy snuggle after Caroline is done eating.  During these moments Caroline snuggles then looks up at Mommy and smiles.  
  • Daddy's Favorite:  When Caroline poops.  She makes funny facial expressions, very large grunts, and has very loud sounding poop.  Now she is even raising her hands above her head as she poops sometimes. Sneezes; they are just adorable.
  • Toys:  She just started liking her jungle tummy time mat, mirrors


After a bath




The pirate


Mommy loves smiles when we snuggle!


Caroline's Health
We have seen the  pediatrician 4 times since leaving the hospital.  Basically we go in to see her weekly.  We have seen the cardiologist two times now.  I've gotten a lot of questions about the cardiologist.  Her cardiologist is HERE in Richmond.  He works with the surgeon who is located in Charlottesville.  When we see the cardiologist we just see him, not the surgeon.  We see him here in Richmond.  That would stink if we had to go to Charlottesville for every appointment!  We really like both her pediatrician and her cardiologist.


Caroline quickly surpassed her birth weight (Babies loose we weight after birth while at the hospital.  They are expected to gain this back in the first two weeks).  At her 1.5 week appt. she had already surpassed it! The only problem is her weight has plateaued since then.  She has been 6 lbs. 12ish oz. for 3 weeks now.  We need her to gain weight.  Because of her lack of weight gain the doctors have changed her diet some.  She is now getting a bottle of formula that has extra formula in it in order to help her gain weight/get more calories.  She is also on two medicines.  Because of the hole in her heart, (read about her heart defect again here or when we met with the surgeon here) some of her blood recirculates through the heart which makes it work harder.  Right now it is working so hard that she is burning all the calories she is eating.  We are hoping to be able to put off her heart surgery until late this summer/early fall.  However, if she doesn't gain weight then that means she will be having surgery earlier.  So to answer the question, "When is she having surgery?" All we can answer is "We don't know."  We are trying to delay the surgery for as long as possible so she can get bigger and so the surgeon has a bigger heart to work with.  This makes it easier for the surgeon and a smaller chance of her having to have a second surgery.  Please pray with us that increasing her calories and her two medicines will help her gain weight by taking some of the stress off of her heart.




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I'm doing great!  I have recovered well from the c-section.  Emotionally I'm doing okay.  I had some major postpartum depression going on during the first two weeks.  Basically leading up to Emily's birthday was really difficult for me.  I was crying every day many times for no reason at all.  Emily combined with being frustrated with nursing, feeling inadequate as a parent, overwhelmed, tired, sad, etc.  I kept saying "I don't know how to love her."  It was a horrible feeling.  After waiting and praying and wanting her so badly for so long all I could think about when I saw her was "How am I supposed to love you?" After we got past Emily's birthday I started doing better.  Now I don't feel that way.  I love her so much and feel so lucky to be her Mommy.  She is having more alert times during the day now too. I'm not sure what to do with her then other than stare back so I've started reading to her. Right now we are going through a book of fairytales.  We are also working on important reading concepts like table of contents, predictions, vocabulary, context clues, character traits, etc. Like I said...I'm not sure what to do w/ her so I'm just doing what I know :)   We are also starting to play on her tummy time mat. 

Don't you love the random sock?




Philip is doing great too.  He went back to work 2 weeks ago.  Luckily he was able to work from home some that first week.  He is such a natural father.  It is amazing to see him in action.  Every time he holds her I want to take a million pictures.  We have been working really well as a team.  She has spent many nights this first month cheering on the Capitals with us. They just beat the Rangers to even the series and Caroline was so excited.  C-A-P-S! CAPS CAPS CAPS!!







Zach is doing pretty well, but he is a bit of a worrier.  Whenever Caroline cries, he gives us a guilt-inducing look that says, "Why aren't you doing anything to help her stop crying?"  It's his own version of Lassie's alert that Timmy fell down into the well.  He always has to check on her when we get home from an outing.  Amazingly he has done a good job of not kissing her.  If you have met Zach then you know this is a shock.  It is obvious that he loves her a lot, even though it means he doesn't get as much attention as he used to.  We can't wait for her to realize that this white fluffy thing is her buddy.  



Oh good.  She is home safely.




Nap time!  Notice Zach on the chair and Caroline in her crib.




I've uploaded pictures from week 2, week 3, and week 4 to the shutterfly site.  Here is the link again. 


http://noakesnest.shutterfly.com/  ----Don't forget to check out the videos too!


You need a password to view the pictures.  If you would like the password all you have to do is ask :)


Thank you for all the sweet emails and facebook messages.  I haven't had a chance to respond to most of them.  I hope to have a chance to do that this week.  I really appreciate the messages, I just haven't been able to find the time to respond!


Love,
Megan and Phil (he wrote some of this!)


First family walk around the neighborhood!



















Wednesday, April 11, 2012

Dear Emily

Dear Emily, 

One year ago today you became Mommy and Daddy's little angel in heaven.  We love you so much and miss you every day of our lives.  Losing you was the hardest thing either of us has ever had to do.  Your memory permeates our lives every day.  We will always treasure our one day with you.  We cannot wait to one day hold you again.  We thank God for you and all that you have given us.  You made Mommy and Daddy’s marriage even stronger.  You helped Mommy’s faith grow in ways that it never had before.  Thank you.  We love you and miss you our dear sweet Emily.

Love,

Mommy and Daddy


Warning...this will probably make you cry.  I cried most of the time I wrote this.  I wrote this in the weeks leading up to Caroline's birth.  I am brutally honest about my feelings from this year, not all of them are pretty.  I tackle some of my struggles with faith in light of our experiences.  I'm not trying to get into a theological debate or to upset anyone.  I'm just being honest.  I can't help the feelings that I have had.  They are not all nice and pretty and holy.  Some are quite mean and unholy in fact.  I hope that they give a better insight into our journey this year.  I hope that my honesty will let others know that they are not alone in their own struggles with pregnancy, grief, jealousy, and faith.      

Also, I realize this is ridiculously long.  Once I started writing I couldn’t stop.  Like I’ve said before, writing this blog has been part of my grieving process.  For whatever reason I felt the need to share these stories. 

Memories of Emily 
It is hard for both Phil and I because we actually have very little memory of Emily.  We had such a small amount of time with her and we were so exhausted and emotional that our memories are blurry.  What I remember more are feelings.  I remember how she felt in my arms.  I remember holding her all night long and kissing her on her forehead every few minutes and telling her I loved her as I attempted to sleep.  All I could think about was these were the only moments I would ever have holding her and there was no way I was going to waste those moments on sleep.  I know when you read that some of you may think it is sweet.  Others may think it is weird.  I totally understand that it sounds weird to hug and kiss and hold all night someone who has died.  I don't care.  Until you have lost a child you will never truly understand the pain and love.
All in all we only had about sixteen hours with Emily.  Can you imagine only having sixteen hours with your child, ever.  Sixteen hours to hold them, kiss them, and tell them how special and loved they are.  Sixteen hours to awe in their beauty, their tininess, their similarities to you and your spouse.  Sixteen hours that have black gloom over them because you know that your time is limited.  You know that you will soon have to say good-bye and never get to see them or hold them again.  Sixteen hours.
What she looked like is fuzzy in my brain.  All we have are the AMAZING photos that our dear friend Julie took of her.  They are something Phil and I treasure.  Because they are so special to us we chose to not share the photos online.  Instead we have shared them in person where we get to share in her memory with others.  Heck it's the only time we get to be those proud parents who get to talk endlessly about their awesome kid.  We have decided to finally share some of these photos.  I would be more than happy to share the rest with anyone who would like to see our sweet baby girl, but only in person.  That way we can share together in her story :)  Julie truly did an amazing job capturing this moment in our life.  Thank you Julie from the bottom of our hearts.  



Julie took this right after I delivered Emily.  We hadn't even held her  yet.  I hadn't even seen her yet.  I was actually freaking out about seeing her.  This is just the raw emotion of an amazing husband comforting his wife and two parents desperately turning to one another for love and support.  I love you Phil.

This is one of our first moments holding Emily.


I'm a mommy.

Phil's a daddy.


Emily Noakes
April 11, 2011
2 pounds 11 ounces
16 inches long
Look at her perfect nose and perfect lips.  You can even see her hair peaking out from under her hat!





  
Look at those adorable fingers and toes!  

Love.

All Photos are courtesy of Julie Massie of Julie Renee Photography.  

The First Week

One of the hardest moments and now the hardest memory that I have of Emily is when we said good-bye.  We had planned it out with one of the nurses.  All of our family left and we had our final private good-bye with Emily.  Phil and I started our good-bye by praying for strength to get through it.  We held her, kissed her and told her how much we loved her.  Neither of us wanted to say good-bye but instinctively we both knew it was time.  When we were done we pressed the nurse button and the nurse came in and we handed Emily over to her.  We watched as she walked out the door with our daughter, our daughter that we would never see or hold or kiss again.  I can't think about that moment without crying.  I can still see the nurse walking out the door.  As she walked out I collapsed onto the bed crying.  This was the first time I really cried about loosing her.  I had held it all in until then.  I had actually been looking forward to having a good cry about it.  And then the on-call doctor came in saying, "Awww I know I know."  I felt as if she was talking to me like I was a child.  It felt fake and I wanted her to go away.  We had what felt like seconds alone and then she interrupted it.  I know she meant well but I was PISSED she came in.  Phil is convinced that she didn't want to scare the other moms with my sobs.  I was so pissed off at her that I immediately stopped crying.  She had interrupted our private mourning and I was never going to get that moment with Phil back.  She walked over and hugged me and patted my back. I looked over her shoulder at Phil.  To her I said, "Thank you." very coldly, almost mechanically.  To him I mouthed, "What the f***?"  Then she left.  I looked at Phil and said, "Well that's not the type of strength I wanted but right now I'm so pissed off that I know I can get up and go."  So I picked up Emily's stuffed animal, Phil picked up my pillow, and we walked out of the hospital hand in hand clinging to our animal and pillow because we had no baby to hold.  In the end my prayer had been answered.  We had the strength to leave.  It was not how I expected or wanted but hey it worked.  Who knows if anything else would have? When I prayed for strength I guess I envisioned having a feeling of calm, like the aura of God surrounding you.  You know very heavenly feeling.  I did not envision God giving us strength through anger.  But he knows us all best right?  

The day that I delivered Emily was a beautiful spring day.  The sunshine, the mild weather, the slight breeze, the daisies blooming all filled me with happiness and peace.  I think of that day whenever the weather reminds me of it and I smile.  It makes me happy to know that the one day I had with Emily was a beautiful, perfect spring day.   Then the following day (day 2) was another beautiful day and guess what; I was smiling.  Actually I was almost giddy with happiness.  That was the day that I wrote the blog about our one day with Emily.  Writing down my memories, her story, made me excited and happy.  I was clinging so hard to them and didn't want to forget a single thing.  Our family must have thought I was going nuts.  I was so darn happy that day.  Day three was hard.  It rained and my mood went down hill.  It was also the day that we had to go to the funeral home and pick out an urn.  Neither Phil nor I could bear the thought of burying her.  We couldn't bear the thought of picking out an urn either.  I can remember being incredibly mad and crying in frustration that we were even in this situation.  Nothing can prepare you for it.  I was in shock.  
All the urns were horrible.  They were all so big or too cutsie.  The guy tried showing us these stupid urns that look like a baby block.  One it looked cheap, two why the hell would I want a pink baby block? We finally found the perfect thing, one that looked like it had flowers on it.  It was elegant yet juvenile.  Perfect.  I remember sitting out the table filling out all the paperwork and breaking down.  The thing that got me was the part that I had to sign.  Right next to the signature it said "Relationship to deceased" and I got to/had to write mother.  I wrote the word and collapsed over crying.  I can remember thinking that this is the only time that I will ever get to fill out a form and say that I'm Emily's mom...and it was on a cremation permission slip. I remember thinking about all the school forms that parents have to fill out and that we would never get that chance.  I wish I would have had the chance to complain about them...it's like a right of parenthood or something :)
Part of the reason we went with the funeral home that we went with was because they offered the cremation service for free to parents of stillborn children.  We thought that the fact that they offered the service for free spoke volumes as to the type of people that ran the funeral home.  It was the type of place we felt okay turning our daughter over to.  The thing was we had no intention of not paying.  Phil had to argue with the man.  He kept saying we really didn't have to do this.  Phil insisted.  I think what made the man back down was when Phil told him this was the one thing he was ever going to get the chance to do for his daughter.  He said that he would never get the chance to spoil her like he wanted to.  All he got was this one thing.  He wanted to do this one thing.  It was a matter of fatherly pride.  My husband is a good man.  A wonderful man.  He is a caring, amazing father to the core.

Personal Struggles

With the loss of an adult you mourn the person.  You mourn the loss of their presence.  It is horrible and sad.  Yet you take comfort from the fact that they lived.  That they experienced life and that while those memories hurt, they also give you strength.  I know that whenever I see pink nail polish, dental floss, or red potatoes I always think of my Grandmother and it brings a smile to my face.  With the loss of a child you mourn the person and the loss of their presence.  But you also mourn for all that could have been, that would have been.  Everything in the world around you makes you think of experiences that they will never have the chance to have.  Moments and memories that you will never share.  In the days, weeks, and months after we lost Emily I found myself being inundated with thoughts of what would have been.  Those realizations were normally what spurred me to cry more than anything else.  I will never get to fill out the mountain of school forms.  I will never get to watch her play sports or dance in a recital.  I will never get to see Phil hold her again.  I will never get to see them dance at her wedding.  This one was particularly hard because we were invited to a bunch of weddings last year.  I realized at the first one that I now hated going to weddings.  I could make it through the ceremony but I could barely hold it together during the reception.  I would sit at the reception waiting in anticipation for the father daughter dance and then the second that I realized it was going to happen I made a beeline out of there until it was done.  I couldn't bear to watch it, I just didn't have the strength.  At one wedding in particular a guest and her husband had a newborn baby.  They were so excited and so in love with her. The three of them actually danced together, the parents just staring at her with undying love in their eyes.  It was beautiful.  I was so jealous.  They had what I wanted.  We left shortly after that, I just couldn't take it anymore.

I have struggled with jealousy this year.   I have felt jealousy towards every pregnant person I see and know and every person with a child.  That's a lot of people.  But most of all I have felt it towards friends.  Since Phil and I started trying, I feel as if almost everyone around me has had kids.  Some started trying way after we had and already have their babies.  Some were pregnant at the same time as me.  Some are already on baby number two!  The women in my life who were pregnant when I was with Emily and with Caroline have been who I have been most jealous of.  After loosing Emily they still had their babies.  It took me months to have the strength to talk to some of my friends.  Others for whatever reason I was completely fine being around.  Then, when pregnant with Caroline, I had a new batch of pregnant friends.  I was so jealous of their "carefree" pregnancies as I saw it.  Oh a little heartburn here, a few weeks of bed rest there, no big deal.  I was in a constant state of fear that my baby would stop moving.   That my baby would die.  While I know this is every parent's fear NO ONE can say they understand this fear unless they have been in our shoes.  I would be walking around all fine and dandy and then panic would set in…when was the last time she moved?  I can’t remember the last time she moved!  So I would lay down on a bed, couch, floor, whatever, begging Caroline to move, begging God for just the tiniest of movements.  Pleading with him to not take another child.  Trying to calm myself and remember to have faith.  All the while planning.  Planning on when to call the doctor, to call Phil. Reliving going to the hospital.  Imagining having to go through the death of another child.  Would they have matching urns? Would I be as sad?  Would I just be numb?  Could I live through this again?  And then she would give me a nudge and I would breath, thank her, tell her how much I love her, and thank God.  The panic would dissipate but it was still there, just waiting to test me again. 
Then on top of that Caroline has a heart defect.  As if this pregnancy wasn't already hard enough.  Now I also had/have jealousy of those around me who had perfect, healthy babies.  My fears were not going to be alleviated by birth, they were going to be transformed into another beast.  Great.  I have worked hard to push aside the jealous feelings and try to be supportive and have empathy for friends as they go through their pregnancy and parenting journeys.  It has been hard at times.  I have even had to cut myself off from people that for whatever reason, I just can't handle being around their happiness.  It makes me an angry, jealous person and I don't like that feeling.  It's not the type of person I want to be.  I have lots of guilt for feeling this way or for doing this to people.  I just don't know how else to keep going.  It's my emotional survival technique. 

Our Faith is Tested

Amazingly, through all we’ve been through our faith is somehow stronger.  I am glad that in our sorrow we were able to turn to God for strength rather than turn away from him in hate.  It hasn’t been easy though.   

After we lost Emily I could truly feel God's presence for perhaps the first time in my life.  It is one thing to have always had faith and believed in God.  It is another to feel God's embrace.  The best way I can describe the peace that I felt after we lost Emily was that I felt as if my soul was getting hugged.  That may sound super weird but it is amazing.  Strength was actually what I had prayed for at the hospital.  Ironically, I'm not a prayerful person.  I have no problem with people that do, it's just not something that comes naturally to me.  When we were in the hospital with Emily I kept turning to prayer and turning to God.  All I kept praying for was strength.  Strength to get through labor.  Strength to hold her.  Strength to say good-bye.   Part of me felt like if God was going to take my daughter from me then the least he could do was give me strength...he owed me that much.  Now looking back I don't think it was that I felt that he owed me, it was that I needed to see him somewhere in the tragedy.  I needed reassurance from him.  I needed to know it was okay.  I needed a reason to have faith in him and in his plan.  The peace I felt at the hospital and afterwards gave me the strength to keep going.  My prayer for strength was answered.  

My biggest test of faith was days after we had lost Emily.  It was Palm Sunday and we decided we really wanted to go to church.   It was the Easter season, a joyous season in Christianity.  I wanted/needed to be filled with joy.   Instead of doing a reading from the bible that Sunday the priest and two parishioners acted out the Passion of the Christ.  Normally this is a nice change of pace at church.  But I couldn't handle it.  All the priest kept talking about was how great Jesus was.  How Jesus knew what it was like to be human.  How he experienced life and then died for us.  My thoughts at the time didn't agree.  All I could think was NO, he had not had the full human experience.  Did he have children?  Did he have a child die?  Did he have to go through labor knowing that your child died inside of you and that you now had to deliver that baby dead? NO! Unless he experienced that then he did not know the type of suffering I was going through.  Oh man I got mad.  I was sitting there fuming and all the priest kept doing was going on and on about how great Jesus was.  I about walked out of church.  As I sat their stewing a thought came to me.  Wait.  God sent his child, his SON.  Oops...I forgot that.  The priest had focused so much on Jesus and his experience that I didn't think about God.   God had to watch his son die.  God had to watch his son suffer.  God and I had something in common, we both lost a child.  Then I was okay again.  I was no longer mad.  After Easter we took a break from church for about eight months.  I was happier in my relationship with God if I didn't go to church.  We actually didn't start going back to church until right around Thanksgiving.  Now it is something I look forward to each Sunday.  It's funny because many of my blog posts discuss my faith which is not something I usually talk about.  To me there are different religions and denominations because people believe different things, interpret things differently.  The important thing to me is to focus on the similarities instead of the differences. I have never been one to wear my religion on my sleeve.  It is something that I think is very personal.  I'm quite confused with what I believe in actually.   Both Phil and I are Christian but I grew up Catholic and Phil grew up Protestant. We agreed before we got married that we would try out all different denominations until we found one that we both felt called to.  For a time it was Presbyterian, then Catholic, and recently a Baptist church.  We have focused on feeling welcomed by the community and feeling enriched by the service.  Now we both like/dislike aspects of both the Catholic Mass and of Protestant services.  Our main focus it trying to find a church community that we are excited to raise our children in.  Faith and religion are a never ending relationship that you choose to take on.  Sometimes you struggle with it.  Other times it gives you strength.  To me questioning it and struggling with it are important aspects of growing in it.  You can not grow in your faith if you follow blindly.  It is a relationship and like all relationships it has ups and downs.  It is something you have to work at.  

Many people have said to me that I have handled loosing Emily and my pregnancy with Caroline better than most would.  I really don't know how to respond to that.  It kinda makes me feel uncomfortable.  In all honesty the only thing that I can attribute my strength to is the strength of my marriage and love for Phil and to my faith.  One might think, "how can she have such strong faith after all of this?" In addition to what I have already discussed in this blog, here is what gave me strength this past year...
I am not afraid of death.  As morbid as this may seem, part of me is now excited for death one day.  For when I die I will get to see my baby girl again and hold her and never let go.  I can think of nothing better than that.  I also had the following vision while driving to work one day this past summer.  I envisioned myself running through the gates of Heaven through white puffy clouds looking for Emily.  Instinctively I knew God was there and felt kinda guilty that I didn't look for him first.  Instinctively I knew he understood my pain and excitement and was okay with Emily being my first priority.  I stopped running, looked around and saw my roommate from college Liz who died two and a half years ago after a difficult battle with cancer.  There she sat in a rocking chair with Emily in her lap, talking to her, and taking care of her for me.  Emily wasn't a baby, she was 4 or 5 years old and had her back to me.  Liz looked up and saw me.  She smiled then leaned down and whispered in Emily's ear.  Emily turned and looked at me and smiled.  Then she jumped off of Liz's lap and came running into my arms and as I scooped her up into my embrace she said, "Mommy, I love you!."  After a time Liz slowly walked up and just gave me this wonderful loving look like it's okay Megan, she's okay, everything is okay.  That vision more than anything has given me peace this year.  I KNOW heaven is for real.  What more can I ask for?

Honoring Emily

Today we are going to spend Emily's Day by going back to the hospital.  We are going to deliver more blankets.  I'm actually really looking forward to this.  It will be a highly symbolic way to handle the day.  
I don't think I really explained in my previous posts why I am making the blankets because I've gotten a lot of questions about them.  Here is why I'm making them:  
On the morning before we went to the hospital I  had started making a blanket for Emily.  When we left for the hospital it was in pieces on the floor in our guestroom.  When I delivered Emily we didn't have much baby stuff yet.  My mom and Phil's mom actually went out and bought something for her to wear while I was in labor.  Talk about Grandma strength :)  I was so sad that I didn't have the blanket that I was going to make to wrap her in.  I didn't want generic hospital clothing or blankets. I wanted something special.  I mean this was the only outfit and only blanket she would ever have.  My friend Amy had given us a blanket when we found out I was pregnant.  That blanket became the blanket that we wrapped Emily in.  In the days and weeks after we lost her Phil and I were like little kids.  We carted around our house Emily's dress, blanket, and a lamb that our neighbor Karen had given us at my neighborhood baby shower.  That lamb was extra special because it is what I carried out of the hospital since I couldn't carry Emily.  After the first couple of weeks the blankets and lamb started staying in our room.  We were 27/28 year olds who snuggled with a stuffed animal and blankets.  After a few more weeks they were folded and put with the memory box that the hospital gave us along with all the lovely cards that we received.  Today they sit on a shelf in our closet.  I can't bring myself to put them in the attic.  They will stay put in our closet where I can see them.  As you can see these few mementos gave us comfort in the days, weeks, and months after we lost Emily.  We will always treasure them.  I decided within days of loosing her that I still wanted to make her blanket but on a smaller scale.  As I furiously made her blanket one morning I decided that I didn't want any other mother of a stillborn child to feel as if she didn't have something special to wrap her baby in.  I talked about it with Phil and he fully supported my idea to make blankets to donate to St. Mary's.  I make each blanket, wrap it up in ribbon and enclose a card with a handwritten note from me.  I have asked the hospital to only give them to mother's who deliver their child stillborn.  A bit of my heart goes into each blanket that I make.  I hope that they are giving other mothers of stillborn babies something to treasure and gain comfort from.  I also hope that the notes that I write to go with the blankets give the moms encouragement and strength during a scary and heartbreaking time.  I want them to know they are not alone.

Blessings

Our marriage is stronger than ever.  We feel so blessed that Emily helped to make it ten times stronger than it was before.  I never knew that was possible.  It is amazing.  I love him so much and thank God everyday for having him as my husband.  His strength throughout my pregnancy with Caroline was amazing.  Whenever I became worried because she hadn't moved recently or because of some new pain he kept calm and reassured me.  He would say, 'Why don't you drink some water she loves it when you drink water.'  Or, 'Have you eaten anything?  Try eating something.'  Or, 'Why don't you lay down for a bit and if you still want to call the doctor then let's call them.'  He was so calm, so reassuring.  He is my rock and I love him with all my heart.
Caroline is a blessing.  She would not be here if we had not lost Emily.  It feels weird saying that, like we swapped one child for another but it's the truth.  We can't help that we lost Emily.  All we can do is rejoice that in her passing we were able to gain another life, the life of her sister.  Now we are blessed enough to have two daughters.  One waiting for us in heaven and one with us here on earth.  So much to live for.  So much to give us peace with the future.   

...

Well after reading that LONG tear jerker...I want to take a moment to thank everyone who has helped Philip and me get through the past year.  I realized after writing my first post about Emily that writing about my feelings was a great form of therapy for me.  I've used it as a way to think through and express some of my emotions this year.  I know I have opened up our personal life to the whole world which is kinda weird and super scary.  But at the same time it has given me strength.  If you know me then you know I'm a people person.  I find happiness and strength through relationships big and small.  You have no idea how much every email, facebook message, "like" of a photo or status, text message, phone call, card, etc. meant to us.  I'm not able to respond to them all but please know that do not go unnoticed.  They have helped to keep our spirits up.  They have helped us to mourn Emily.  They have helped us to be excited about Caroline.  You truly have no idea how much your tiny bits of support worked together to keep us going.  THANK YOU.

From here on out I will continue to update you on our growing "nest".  I will give updates as I have time on Caroline's growth and development and her heart journey.  I see this blog as a way to communicate all the fun memories that we are making with Caroline.  We are so excited to have finally been able to bring a child home.  We love her so much.  I will still be open about how we are doing but I am ready for some carefree posts.  I'm ready to celebrate our family.  I'm ready to move forward.

Love,
Megan