Three Months Old!

Quick update:
We are still at St. Mary's in Richmond.  We will get transferred to UVA on the 5th.  Surgery will be early the week of the 9th.  We are guessing the 9th or 10th.  I will update once we get the real date.  All of us are doing well. Just getting to know our wonderful doctors and nurses :)  We are waiting to gain a bit more weight but more importantly for there to be an opening in the surgery schedule and a bed available at UVA.

• Age: 3 months / 13 weeks
• Weight: 9 pounds 2.6 ounces WOW!!! She is starting to get some fat rolls!
• Height:  22 inches (about a week and a half ago)
• Head Circumference: Not sure.  At two months it was 14.75 (25th percentile)
• Hair Color:  Brown with red highlights
• Eye Color: Grey blue (the doctor said this will change to her permanent color between 6 and 9 months)
• Diaper Size:  Size 1!  They are still a bit big but that is okay.
• Clothing Size:  0-3 
• Nicknames:  My love, 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, choking herself by chewing on her finger, hitting her toys, mobile attention span (she will spend about 20 minutes playing with her mobile independently), book attention (she will look from one page to the next for a whole book), playing kick the blanket off
• Developing Skills:  Cooing, holding head up in her seat, sticking her tongue out when we do, making a pop noise with her lips, kissing, saying "ah", playing peek-a-boo
• Likes:  Playing with 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), interacting with people, reading books, baths, trying to pull out her NG tube, pacifier
• 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, her tube moving around, tape being taken off of her, blood being drawn, gas
• Mommy's Favorite:  When she smiles, when she trys to imitate the 'ah' noise
• Daddy's Favorite:  When she smiles, sneezes, when she trys to imitate the pop noise
• Toys:  Mobile, books, blankets, mirrors, laying on her mat playing with hanging toys, Mommy and Daddy!
• Sleep:  She falls asleep between 9:30 and 10 and sleeps until 8am.  This is mainly due to her special feeding routine (see below)
• Feeding:  She gets bottle fed and tube fed during the day.  She is fed by just the tube at night.  See feeding explanation below.



13 weeks (today!)
Notice the sock on her hand.  Those little fingers keep trying to pull her tube out.
I love that it looks like she is playing with a sock puppet in this photo.



12 weeks

Long Update:

So we have been back at the hospital for a week and a half now.  It has been a whirlwind.  When we first came in last week we thought that Caroline was going to possibly have surgery the next day.  Her liver was enlarged, the right side of her heart was enlarged, and she was having trouble breathing.  After changing some of her medications and feedings Caroline turned around so much that the doctors even considered discharging us to go pack on some pounds at home for a week or so before surgery if she continued to do well.  Phil and I were very nervous about this because we didn't want to go home and have to come back a few days later.  We voiced our concerns and the doctors told us it wasn't definite that we were getting discharged.  While overall she is doing better than when we first admitted her, she is by no means able to go home.  Her blood pressures have been low at times, she is spending long periods of time panting, she is fussier, and she is sleepy.  Now I know that some of these things are normal for all babies but trust me when I say it is different.  A few weeks ago Caroline was up a lot of the day and super interactive and happy.  Now she is fluctuating between wanting to sleep most of the day, fussing for long periods of time, and brief periods of happy interaction.  Thursday and Friday in particular were hard.  When she wasn't fussy she has just kinda laid there and stared at me or my mom.  She just looked like she didn't feel well.  My happy baby is just not so happy right now which is hard to see and deal with.  


Everyone keeps saying that everything will be different after the surgery.  I can't put all my hopes on this surgery.  If I do that then I won't be emotionally able to handle it if everything isn't better.  While in theory this surgery should be successful, it doesn't mean that all this will be past us.  We won't know her true prognosis until after the surgery.  Only then will we know if she will need more surgeries in the future.  Only then will we know if there were any complications.  Only then will we know what type of long term prognosis she will have.  And our biggest fear, only then will we know whether she will survive.  I am terrified of the surgeon coming out and telling us she didn't make it or that something bad happened like brain damage or who knows what (I try not to think about the bad stuff).  I keep trying to remind myself that if she doesn't have this surgery then she will eventually pass so there is no reason to fear the surgery because it is the thing that will keep her alive.  It is a scary feeling to be looking forward to your child having open heart surgery.  


I have spent every night at the hospital with Caroline.  I'm supposed to sleep at home this weekend and Phil would stay with her but I don't know if I will end up doing that.  I've gone home a few times at night this week and it is hard going home.  I walk out of the hospital and I feel as if I am in a whole different world, a whole different life.  In here everything revolves around her next meal, my next meal, nurse report, meeting with a doctor, meeting with a therapist, etc.  I walk outside and wow, there are other people!  Haha I know that sounds crazy but I'm living in quite a bubble right now.  

Sleepy time

My bed

Phil's mom was here Tuesday and Wednesday this week.  My mom was here last weekend and is here Thursday-Sunday right now.  It has been great to have both of their help and company.  I have really needed my mom here.  Sometimes a girl just needs her Mommy :)  When she is here is when I start dealing with myself.  The only problem is that I just start breaking down.  It all becomes too much.  It is easier to just focus on taking care of Caroline, staying in my own little hospital world, and trying to rise above the fear.  Going home has actually made the fear worse.  I see my empty house and I can't help but think, 'Will I get to bring my baby girl home?' I went by the house the other day, walked upstairs, saw her empty room and just started crying.  I want to go home but it is just weird and empty feeling.  I have some friends who have had children in the hospital for months at a time.  I have so much respect for them.  It is not easy to balance life.  

Grandma Karen working on sounds

This is how Caroline fell asleep - sitting upright on ReRa's lap.

Gran Dan

Grandpa Jeff

While I have spent every night here it doesn't mean I haven't gotten out.  Phil and I have gone out to dinner multiple times while one of the Grandma's babysits.  Last weekend we went to a local restaurant, the Boathouse.  It is right on the James River and overlooks the city.  It was beautiful.  We sat out on the deck, had dinner and a beer, and relaxed.  It was wonderful.  I enjoy going out, just not going home.  

Oops I closed my eyes!  That sun was shining bright!
See the city in the background?  Beautiful.

I have learned a lot of medical terms while here.  I'm quite proud of all that I've learned and continue to learn.  I want to be able to understand all the medical terminology.  I like being able to talk to the nurses and doctors using medical terms correctly.  I've learned a lot about blood pressure, pulse ox, heart rate, and respiratory rate.  I'm really good with medical terms associated with her feedings.  It is important to me to be the main care giver still and not let the nurses do everything.  This means I'm making Caroline's formula and feeding it to her through her bottle and tube.  I've also learned how to use their feeding tube pump.  Her daily feeds go like this:  She gets 10mL PO (PO=in a bottle).  Then I use my stethoscope and a syringe and do an air bolus to check tube placement (air bolus=pushing 3mL of air into her tube and at the same time listening with the stethoscope to her tummy to hear a pop or woosh sound which means the tube is in her tummy).  Then we gavage the rest of her feed which is 50mL (Gavage=through the tube).  We've tried a bunch of different ways to gavage her food.  Below is a picture of what has seemed to work the best.  We hook her tube up to a large syringe and pour small amount of her food into the syringe.  This is called a gravity feed because gravity brings the food down and into her tube.  The reason this works so well is because it is controlled so the food doesn't go in too fast and because if she is gassy gas can escape back out the tube.  She has been less fussy and less gassy since we started this way of feeding her so I'm sticking with it!  During the night she gets hooked up to her pump and she gets 30mL an hour for 12 hours.  They have changed to mainly tube feeds in order to help her gain more weight.  Not have to work for food=not burning calories=weight gain!

This is all she is allowed to have by bottle, 10mL.

Playing and eating at the same time.
See the giant syringe in my hand?

It is hard to tell in this picture but my mom is holding up
 the tubing connected to Caroline to help feed her.

Formula goes in and down her tube and into her tummy.
Doesn't this remind you of a hamster water bottle kinda thing?
We find it kinda amusing.

We've had a couple of scary storms here in Richmond this week.  Both times I disconnected her from her monitors and went someplace else because the amount of wind, rain, and hail combined with our giant window scared me.  So with the first storm I fed her in the bathroom, in the dark (we had lost power), with just a flashlight shining on me.  The second storm happened when she was doing her tube feeding at night.  Phil and I walked laps in the hall during this storm.  We had winds up to 80 mph, it was crazy!

Notice the glass off the table?!  Thankfully the chairs saved the glass.

It's hard to tell but our tree split.

Many of you have asked how Zach is doing.  Our wonderful neighbors Amanda and Ricky took care of him for the first few days.  They were so sweet.  They would bring him over to their house to play with their dog Zoey (Zach's girlfriend) before work, at lunch, and at night.  He loved it so much that when Phil went home to take him on a walk Zach ran right over to their house! Now he is staying with my parents .  Amanda even called me to tell me what damage we had on our house after the storm this week.  Our other neighbors, Donna and Sam, have already taken care of some trees that split in our yard and Sam is going to fix our siding that came off.  We are so blessed to have such fabulous neighbors.  

Zach and Zoey
Thank you for the photo updates Amanda!

Also Zach got professionally groomed.  Normally we cut him.  Like his new haircut?  It's not our favorite but we just don't have time to groom him ourselves right now.  He pouted afterward because he likes his beard and they had to cut a lot of his beard off because it was matted. I started laughing hysterically when I saw this picture.

Oh my.

We are so happy to be at St. Mary's.  Every day they have a chaplain get on the intercom and say a daily prayer.  It is nice to have that type of atmosphere here.  The nurses and doctors are so supportive and caring.  We've had most of them at some point. Some of them will even stop by to say hi if they aren't our nurse or doctor that day.  They love all of her outfits and especially bows.  In my opinion bows make the hospital a much happier place.  After her surgery she won't be able to wear clothes for a few days but she WILL have a bow in her hair if I have anything to say about it.  Here are some of our repeat doctors and nurses.  I haven't had a chance to take pictures of Caroline with all of them. 


At our last visit to St. Mary's it was very weird and hard for me to not be on the Labor and Delivery floor.  It was also weird that Emily wasn't a central part of our experience.  Loosing Emily has been such a central part of our lives for so long it is weird for her loss to no longer be associated with Caroline.  I don't think I'm explaining this right.  When pregnant with Caroline we talked with doctors about Emily all the time and preventing the loss of Caroline.  While we have shared our pregnancy history with some of our doctors and nurses here, her loss is no longer integral to Caroline's survival.  Anyway, while it was weird a few weeks ago now I feel at home on the pediatrics unit and know that Caroline is in fabulous hands.  

Doctor Lakdawala

Nurse Vera

Some of our night nurses Jessi and Medora
(They look fabulous after a 12 hour overnight shift!)

Caroline getting a famous Nurse Viki bath

Today she has been much happier than the rest of this week.  She is trying soooo hard to imitate 'ah' sounds, pop sounds with our lips, and kiss.  She LOVES that mobile still and has even caught some  of the animals on her mobile and held them! She loves sitting and looking around at us and things in the room.  We love her so much.

Miss Pam came to visit

Miss Maria came to visit too!

It's important to sanitize your hands A LOT! 

Peek-a-boo!

Big eyes

Ummm Daddy what are you doing?

Sad face

Playing with Mommy and Daddy

I LOVE my mobile!

I will update again once we find out the actual surgery date or once we get to UVA, whichever is first.  I'm in the process of uploading a ton of photos to the shutterfly site so I will include that too when I update the blog next week. 


Have a wonderful weekend!


Love,
Megan

Another day, another plan

Good Morning World!

I LOVE this dress!  It is so much fun to play with.

So what we learned last week while at the hospital still reigns true today...plans change.  There is always someone telling you what the plan is, and then it changes.  We met with one of our cardiologists today and she said to expect surgery sometime to the middle or end of next week.  I will update when we get an actual date.  However, as I said before, plans can always change.  The cardiologists and surgeon are all in discussion about when to have her surgery.  Right now our job is to fatten this baby up! Since we have exhausted all other options they just want to be able to monitor her vitals at the hospital while we await surgery.  Phil and I are making and giving her all her bottles and her NG tube feeding.  We are much easier patients than last week when we weren't comfortable with the tube yet.  Now we are in charge of just about everything.  The nurses and doctors and just taking and watching her vitals.  I'm taking lots of pictures because I want to document it all.  My plan is to make her a book about the surgery to help explain it to her as she grows up.  It's the only way I can think of how to explain why she has a big scar on her chest.  Making customized children's books is actually something I'm really enjoying making for her.  I have a future post that will go more into some of the things I have made for her.  


Caroline woke up all smiles this morning.  She has been kicking her legs around and looks like she is trying to ride a bike.  One of her newest talents is chewing on her fingers then sticking them in her mouth and making herself choke.  She doesn't seem to be to stressed by it because she keeps doing it over and over again.   She has also started reaching out to us.  If I put my hand in front of her she reaches out for it and puts her hand in mine.  I love it!  I dressed her in one of her favorite outfits today, a onesie dress.  She loves to lift up the dress and play with it.  She is such a happy baby :)  We also got her favorite mobile back that she had last week.  I kept bugging our nurses about it until they found it.  Yep I'm that mom :)  Though I feel like I had good reason to bug them about it.  We got a mobile yesterday that she liked at first but got bored with it pretty quick.  It just hung there and didn't play music or move or anything.  Her favorite one moves back and forth and plays music.  What is really cool is that she tries and is able to hit the toys as they move!  What fabulous hand-eye coordination for a 11 week 5 day old baby!  Maybe she will be some type of sports superstar.  Who knows ;)  She also is great at tracking just one object on the mobile as it moves.  She has an AMAZING attention span.  She will play with it for a good 20 minutes, smiling, and cooing at it.  Clearly I had a right to bug the nurses about getting this mobile back...so many positive developmental aspects to it!


Philip and I are doing much better this morning.  Yesterday was just so overwhelming.  We are much more at peace today.  We are just loving on our beautiful daughter and enjoying this unexpected family time.  My parents are coming this weekend which I am looking forward to.  All our family has been so supportive.  We've been having them come in waves for support.  Last week Phil's mom came.  This week my parents.  I think all of them are planning on going to Charlottesville for her surgery.  We truly appreciate them rearranging schedules and plans to be here for us and for Caroline.  We are so blessed.  

Love that mobile but love Daddy more :)

I will update again if anything changes.  Thank you for all the emails, text messages, facebook messages, and especially for all the prayers.  We feel so blessed to have so many people thinking about us and praying for us.  Thank you.


Have a great Thursday!


Love,
Megan

Livin' on a Prayer

Earlier tonight at the hospital.

After being home since Friday night (6/15) we are now back at the hospital and Caroline will be having surgery soon.  We aren't sure when.  Possibly Friday? Most likely next week.  We don't know.  We will know more tomorrow morning.


Since we last chatted...
Caroline did great at home.  Phil and I were starting to feel confident about checking to make sure her tube was in the right place.  We had to learn how to do an air bolus---use a syringe filled with air that you push in her tube.  At the same time you put a stethoscope on her stomach and listen for a woosh or pop sound.  Yes we have a stethoscope! We had one night where the sound sounded different and we freaked out a bit but it was all okay.  We worked on doing massive amounts of laundry and getting all the medical supplies organized and cute looking. We also bought Caroline an awesome mobile.  Man she loves that thing!

We had a great weekend at home.  Phil took Caroline and Zach to the park on Saturday and I had a much needed spa day.  I had scheduled the spa day weeks ago but it ended up being really good timing.  I needed that after 4 days at the hospital.  On Father's Day Caroline and I took Philip out to lunch at Taco Bell (his favorite food place).  Later on we went on a long walk at the park with Zach.  It was great!  Caroline and I gave Philip a framed picture of the two of them, a book with her handprints and room to put her handprints every year on Father's Day, a corney "World's Best Dad" mug, and two kids book about loving Daddy.  

Happy Father's Day!  yuuummm Taco Bell

We have been determined to not let this tube run our lives.  Mommy and Caroline have even gone shopping and out to lunch this week!  

We met our home nurse who comes by 3 times a week.  She is great!  It has been reassuring to know that we have additional support.  


New Developments
Our home nurse noticed on Monday that Caroline was pulling some in her chest to breathe.  Look at the picture below to know what I mean.  On Tuesday I still saw it so I decided to take her into the pediatrician.  The pediatrician called the cardiologist to discuss what she was seeing with him.  Basically the pulling in her chest was a sign that she is having difficulty breathing.  We have increased her food in order to help her gain weight but the increase in food is too much for her little body to handle.  Thus, she is laboring more to breathe.  We don't want to back down on the amount of food she is given because she needs that food in order to thrive.  Actually what we were officially admitted to the hospital last week under was "Failure to Thrive".  The cardiologist had us up her medications to see if that helped.  And we were told that this means that it is time for surgery.  Like the cardiologist has been saying all along, Caroline will let us know when she is ready.  

Normal breathing when we first got home last week.

This week.  You can see the definition between her ribs and belly.
That is the  pulling/labored breathing.

You can see it here too.  Also, look how much she loves her mobile!

Today despite the increase in medications Caroline was still laboring to breathe.  I took her back into the pediatrician who said that Caroline was slightly worse than yesterday.  She wanted us to go home and pack and she would talk to the cardiologist and the hospital and get us admitted.  While I was packing she called to say that we needed to go see the cardiologist.  They didn't know whether they wanted to admit us directly to UVA's hospital in Charlottesville (about an hour from our house) where she will be getting the surgery or the local hospital.  I was now told to pack like we were going for surgery which will be 5-10 days. I just started throwing stuff into bags and into the car.  I was scared.  Going to UVA already meant things were bad or that surgery was going to be in the next day or two.  Once we got to the cardiologist we were seen by one of the doctors in the practice (our doctor was at UVA for his weekly meeting with the surgery team).  She was pleased with Caroline's numbers and even considered not admitting us to the hospital.  Phil and I expressed our desire to readmit her because we are nervous and don't want to miss something.  She then did an ultrasound of Caroline's heart.  She noticed that most of her blood flow is going through the right side and not the left side of the heart.  That means blood is mainly going to her lungs and not as much out of her heart an into her body.  She thinks this will be fine after surgery but it is just another thing to add to the mix.  She agreed to admit her to St. Mary's Hospital in Richmond.  Caroline is admitted under the labels "Failure to Thrive" and "Congestive Heart Failure".  Basically we have upped her medications as much as possible and she is getting fed by a tube.  There really isn't much more they can do other than surgery. Our cardiologist should be by tomorrow and let us know the plan for surgery.  We think we may be getting medically transported to UVA tomorrow, we are not sure.  Long story short, Caroline needs her heart surgery.  It is sooner than we originally thought and she hasn't gained as much weight as we would like but as Phil's cousin reminded me tonight, this is all God's plan not ours. What is that quote? "If you want to make God laugh, tell him about your plans." It is okay that it is June and not August or September. This is just when she was meant to have surgery (easier said than done but a friend suggested that idea and I have tried to run with it). I also try to remember what our cardiologist said, "This isn't her forever heart. What we are dealing with now is temporary." The surgery is a good thing because it will fix what is wrong and make things easier for her. Yes we would like to wait longer but if she needs it now then that is just what needs to happen. Basically I'm trying to look at the surgery as a positive thing. I'm still scared shitless about it and what her prognosis will actually be afterward because I know it depends on how well it goes. But hey, gotta find something positive about your child having open heart surgery right? 


I answered questions about the surgery back at this post.  

Phil and I are hardly holding it together.  We keep holding her and snuggling her.  We can't believe surgery is upon us.  We are both scared.  Actually yesterday when they told me she would be having surgery in the next week or two I started crying and saying "I can't loose another baby, I just can't loose her."  I pulled myself together and was fine until getting to the hospital today.  Last week I was all calm and comfortable at the hospital.  I really wasn't scared.  Now I'm terrified.  I went for a walk earlier so I wouldn't just sit in the room and cry.      I don't think Phil nor I know how we will be able stay somewhat composed while she is in surgery for hours.  Our fears of loss are hard to handle.  We just love Caroline so much.    

I think the hardest thing to come to terms with is why/how this could be happening to such a wonderful, small, innocent little child. I look at Caroline and can't believe that something is wrong with her heart. I look at her chest and I am sad that one day soon there will be a scar there. I look at her feet and still see little red dots on her heels from all the blood they took at the hospital last week and I can't imagine her with tubes everywhere but I know they are coming. It doesn't seem fair that she is and will have to go through so much. I don't know how to deal with these feelings of unfairness and sadness that your child has to go through this. I try to remind myself that we are so lucky to have her and that we have amazing doctors and technology. If we didn't have the technology that we have today then Caroline would not be okay and my fear of two urns would be a certainty. Now with technology that is no longer a certainty. This past year has taught me to be realistic and I know it is a possibility but I try to focus on the positive. It is scary to have the fear of loosing her in the back of my mind always... there is nothing I can do though. One of my friends said to me when I was pregnant and freaking out one day..."It is okay. It is in God's hands." I find myself repeating that to myself when I get overwhelmed with fear. It is in his hands and I have to have faith in him no matter how hard that may be (and it ain't easy) because if I don't have faith that it will be okay how do I go through each day?

I don't know when I will feel like writing again or when I will have the chance to write again.  Right now we are just taking each moment as it comes.  

Please join us in praying for the doctors and nurses taking care of Caroline.  Please pray for Philip and I to have strength as we go through this.  And pray for our beautiful daughter Caroline to make it through this impending surgery with no complications.  Right now we are living off your prayers.  Thank you :)

Love,

Megan

9 weeks 

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.

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