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