Day 5: A Song That Means A Lot To Me

There are a few songs that mean an awful lot to me.  There is the song I danced to at my wedding (Making Memories of Us by Keith Urban), and the song that ran through my head constantly in the days leading up to and following Claire's heart surgery (What Faith Can Do by Kutless), but I decided to go with the song that came to mind as soon as I saw this day's topic.



This song will ALWAYS remind me of Brian.  For months, even years, I couldn't hear it without crying, but these days I can smile knowing that Brian is in a good place.

31 for 21: Open Heart Surgery Advice

 

Four months ago today I'd just handed my baby girl off to a surgeon, and was anxiously awaiting updates on her OHS.  Today, Claire is healthy and thriving, and that scar on her chest is the only reminder of her surgery.

I have a friend whose little girl will be having OHS soon.  She doesn't share Claire's extra chromosome, but she does have the defect (AVSD) that so many of us are familiar with.  To help prepare Lu's family for her surgery I wanted to put together a list of things that were helpful for us, or things I wish I'd known a head of time.

• See if there is some place other than the main surgery waiting room for you to wait during the surgery.  We were able to wait in one of the outpatient hospital rooms and it worked very well.  It was quieter than the main waiting room, and also allowed me a place to pump.  This was important because I didn't want to have to leave to pump and miss an update.
• Bring snacks and water with you for surgery day.  I didn't want to risk missing an update, and having food with me meant I didn't have to make a trip to the cafeteria.
• Have something mindless to do during the surgery.  I had a magazine to flip through and my computer to keep me occupied, and it helped keep me from worrying as much.
• Get a room at the Ronald McDonald House.  When Claire was in the PICU, I was allowed to stay in the room with her overnight, but there was no shower, only a shared bathroom.  Getting out of the hospital for a bit and getting freshened up really helped my state of mind.  Once she was moved to the floor there was a full bathroom in her room.
• I had a radio beside Claire while she was in the hospital.  It helped calm me, and also offered some relief from all the hospital noises.
• Let the nurses take care of the procedures that may be scary or painful.  You should be a source of comfort for your baby, and not associated with her tears.
• Baby Legs are a great way to keep your little one warm while she is still covered in tubes and wires.  And, they're awfully cute!
• ETA:  I knew I'd forgotten something!  Thanks Becca for the reminder.  Looking at pictures of other kids after surgery was very helpful.  While it was still awfully hard to see MY baby with wires and tubes everywhere, at least I had an idea what to expect.  Here are Claire's surgery pictures.

If you have additional advice or suggestions, please leave comments!

 

6 Month Stats

Claire had her six month well baby appointment last Wednesday, and she is a growing machine since her OHS!

She weighs 13 lb, 12 oz.  (50% on Ds chart, 10% typical) and is 24.5 inches long (35% Ds, 18% typical).  She weighed 11 lb, 8 oz before her surgery just 6 weeks ago. While I am absolutely thrilled with all this weight gain (she didn't gain anything in the 2 weeks prior to OHS), it means that I bought WAY too many size 1/2 diapers!  I knew she would take off after surgery, but I didn't expect an almost 2.5 lb gain in 6 weeks. 

Claire got two shots at the appointment and did as well as can be expected with them.  There were the usual tears, but I was able to get her calmed down pretty quickly.  One of her poor little legs still has a knot in it from the shot, but it doesn't seem to be bothering her.  The appointment wore her out and she crashed on the floor after just a couple of minutes.

Other six month stuff:

• We tried cereal for the first time last week after her well baby appt.  It went ok and I have lots of cute pictures to share.
• Claire's favorite toy is her Octoplush.  She clutches him to her chest causing him to cycle endlessly through his songs.  Some other favorite toys include her Oball Rattle and Crinkle Book.  Links and her mirror are still hits as well.
• I'm going to have to move Claire out of our room soon.  The weight limit on her bassinet is 15 lbs, so I probably only have about a month left before she's at that weight.  Our house is a bi-level, so she'll be on a different floor, and I think she's going to sleep on her stomach in her crib, neither of which I'm crazy about.
• Claire is eating about 20-24 oz a day. She still sleeps through the night (9-5:30), but isn't on a good nap schedule.  Some days have one nap, some days four naps.
• We had a follow up appt with an eye Dr a couple of weeks ago to talk about her nystagmus.  The Dr did a VERY quick exam, said everything looked perfect with no peripheral vision loss like we were concerned about, and sent us on our way.  Yes, I'm thrilled her eyes look great (back in a year for a check up), but I wasn't excited about a 4 hour round trip drive for a 15 minute appt...We still need to do a swallow study and hearing test to finish up her 6 month appts.
• Gravity has finally worked its magic on her hair and it no longer stands straight up.  I'm going to have to get used to putting barrettes in her hair though because it's long enough that it's ALWAYS in her eyes.

Whew, I think that catches me up for now!

Sitting Pretty and Cardio Update

Before Claire's OHS we tried to use her Bumbo a couple of times and it just didn't work.  She didn't have the trunk strength even though she had the desire to sit.  We were only able to put her in the chair for a few seconds before she leaned forward and became a big ball of baby.  Now, a month later, it's a whole different story!

Claire has been trying to sit up for so long.  She refuses to lay flat, and always has her head up and abs flexed.  We tried the Bumbo again last night and she loved it.  She could sit up, look around and play with her toys.

Yesterday, we had Claire's one month OHS followup.  The Dr did another echo, and while they can see some minor leakage with the valves, they can't hear a murmur.  She has a normally functioning heart and no restrictions at all!  We are so thankful to have her surgery behind us and are praising God that her repair is perfect.

And, just a final couple of pictures because her expressions just make me laugh!

Off Oxygen for Good!

On Wednesday I took Claire into her doctor.  The appointment was meant to check her oxygen levels while she was sleeping.  I keep her awake until right before we left the house for the appt (the clinic is literally 5 minutes from our house) and of course the little stinker woke up about 2 minutes before they called us back.  Even though her nap lasted all of 15 minutes there was no way she was going back to sleep again.  Her doctor wasn't comfortable just taking her off the O2 without knowing what her levels were so he had a monitor sent to the house for her to wear overnight. 

She fell asleep in the living room with us, so we got her moved into her room and hooked up.  She has really ticklish feet so it's always a trick getting the monitor on her toe.  While we were getting her settled she kept dropping into the high 80s and I had to keep adjusting the alarm so it wasn't going off.  I was afraid it was going to be a long night, but once she quit moving around she was a steady 92-94% all night long.  This is a little lower than she is when she's awake, but the doctor was happy with the levels and she is officially off the oxygen!

We are still on a therapy hiatus right now.  I let her spend all the time on her tummy that she wants, but I haven't really been pushing any of her exercises, and it's been really nice.  When we are playing I still think about how I should do things with her, but it's not as all consuming as it was before her surgery.  The break has showed me that she is still going to learn new things (she's starting to pivot on her tummy) without me pushing all the time.  I still have some mommy guilt that I'm not doing enough for her, but the surgery has been a nice reason just to sit and cuddle.

I'd like to start taking more pictures of Claire, but I really need and new camera and can't decide what I want to buy.  Hopefully I'll decide soon, because these posts need pictures!

Surgery Pictures

Whew!  Darren spent the weekend at the farm with his parents and after spending all weekend with Claire with no help, I need a break. So I'm finally going to get surgery pictures posted while he's feeding her the last bottle of the night.  There isn't really anything graphic about the pictures, but there is a very small person surrounded by lots of wires and equipment.   ETA:  It's now 2 1/2 days later and I'm finally finding time to finish this post...

Day 0: Pre-Op

A little daddy time as we hung out in the RMH the night before the surgery.  We had a wonderful dinner at Red Lobster, gave Claire a bath, finishing with her antiseptic wipes, then settled in for a good night's sleep.

Day 1: Surgery Day

When we first go to see Claire, right after the surgery, her room was FILLED with people.  We had the largest room, right across from the nurses station, and it was pretty crowded.  There were probably 10-15 nurses and doctors getting her settled and all her equipment set up.  We got to see her for just a minute before we were asked to leave so they could finish.  After about an hour we were let back in and stayed with her from there on out.  Claire had 2 nurses that were assigned to just her for the rest of the day shift and the overnight shift.

Don't you love the bow?!?  It was already in her hair when we got to see her for the first time and I loved it!  The patches on her forehead were to measure her O2 in her brain.  On her right arm is blood pressure cuff as her arterial line (in her left wrist) wasn't working right.  They were able to pull blood from it, but it wouldn't read her BP like it should have.  Her catheter bag is on her left leg and the tube across her middle running down is her chest tube.  She also has an access line in her neck, but you can't really see it because the vent tube is in the way.

I was really surprised that this was pretty much all the equipment that they used for her.  After seeing others surgery pictures I was expecting MUCH more.  She had just 2 IV poles, with many attachments, and the monitor over her head that was watching vitals.  In the middle of the picture, on the right side, you can see Claire's angel watching over her.

This was a gift from her surgeon and it stayed by her bed always!

Day 2: Off The Vent and Eating

Claire got off the vent about 2am, about 12 hours after getting out of surgery.  They had turned down the settings throughout the night and she was breathing over the vent well.  She'd had a couple of episodes where she woke up and became very agitated until they were able to get pain meds in her.  Since she was so feisty the vent was removed and she didn't have any problems at all.  By morning she was looking for food and very happy to get a bottle.  We started her off slowly, but she was up to eating about 3oz a feeding just a few hours later.

We had to turn her poor little hands into clubs as my monkey child loves to grab and cling to anything within reach.  Unfortunately the lines in her neck, and her vent before they removed it, were most often what she grabbed on to.  I felt bad for her wrists as her hands must have been heavy!

The bow from right after surgery kept falling out so we went with the whale tail on the top of her head instead!

Day 3: Holding My Girl and Moved to the Peds Floor

New day, new hair ribbon!  The chest tube was removed less than 48 hours after she came out of surgery and that meant we were finally able to hold her.  I don't think she was in her bed much that day as she got (carefully!!) passed from arm to arm.

This is her new bed on the Peds floor.  When she was napping we had a modified swaddle blanket around her middle and it seemed to help her sleep.  We also had to keep a blanket tucked under her butt as she kept sliding down the incline.  The baby legs worked wonderfully (thanks for all your advice!) and I loved that I was able to find some with hearts.

This blanket was a gift from the the volunteers who are always making things for the kiddos who are in the hospital.  I love the color of it and it is so soft.  Claire appreciated the fact that she could hang on to it even when her arms were covered up!

Day 4: Going Home

72 hours after coming out of OHS our little super star was released from the hospital.  She was sent home on O2 to use at night and this is us (impatiently) waiting for the O2 people to bring us a bottle for the ride home.

I know not every one's surgery experience is as quick and easy as ours was, but I was just amazed by how quickly she healed and bounced back.  It was hard seeing her covered in wires and tubes, but they disappeared so fast that I think one of the hardest parts for me were the blood draws.  On the day we were released it took HOURS for them to get enough blood to check her potassium.  They needed to give her potassium the day before, and they wouldn't let us leave until they could check her levels. And these weren't the lab people trying.  I wouldn't even let them near her.  These were the most experienced Peds, PICU and NICU nurses.  There were probably 4-5 groups of people that tried over 3 hours before they got what the needed.  Claire and I both shed lots of tears during this process!

We were awfully careful with how we moved Claire for the next couple of weeks.  She was never picked up under the arms, and when we laid her on the floor I put blankets around her so she wouldn't roll and hurt herself.  She started rolling to her side right after we got home, but I made her wait a bit before going all the way to her belly. 

Tomorrow will be 3 weeks since her surgery, and except for her scar (which is beautiful!) you wouldn't even be able to tell she had surgery.

12 Days After OHS...

Claire has decided she's ready for tummy time!  She doesn't roll off her belly very well, so I only let her stay on her tummy for short periods, but she loves not being stuck on her back all the time.

Sorry for the long absence, the 2 days in the PICU with NO sleep took longer to get over than I thought they would.  Clarie is doing fabulous.  She's got a ton more energy (which mean shorter naps...) but she is also eating better.  She can finish a bottle much faster, and is usually eating more and more frequently.  Her incision is healing beautifully and we'll be be ready to head to the pool to check out the splash park soon.

We had a cardio follow up and echo on Thursday and the Dr said her repair looked beautiful.  Right after surgery they thought they saw a very small VSD, but on last week's echo they couldn't see it at all.  So, either it was never there to begin with, or else it already healed closed.  Claire is still on O2 while she sleeps, but I'm hoping her levels are better at her check up next week and we can get rid of the extra tubes!

I loved spending last week with Claire, but am ready to get back into the office for a couple of days this week.  I'm not so good at this working from home thing....

My Amazing Baby!

Yesterday, 72 hours after having open heart surgery, Claire was released from the hospital!  Her recovery has been absolutely amazing, and we are so happy to be HOME!!

Today, we went to church, took a super long nap and are just so thankful to being hanging out with our girl at home.  I have lots of pictures to get posted, but tonight will be spent snuggling on the couch.

Thank you again for all of your prayers and support.  I truly believe you all lifting Claire up is what has allowed us to be home so soon after such a major surgery.  God is so good!

Wire Free and Holding My Baby!

Claire is now wire free!  The chest tube, IV, and O2 were all removed this morning.  Her O2 dips a little while she's sleeping, but not enough that they are worrying about it.  We are moving to the Peds floor (hopefully sometime) this morning.  They've been working on the move for about two hours now and not much has been accomplished, so it's hard to say when we'll actually get to the new room.

The best part of the day, by far, is being able to hold my girl again!  I'm a little nervous moving her around, but once we get settled in the chair it's just wonderful.  She's doing so well it sounds like we may be going home on Sunday!  God is so good!

Sorry for the short update, but it's my turn to hold Claire again. :)

Off the Vent and Eating

Claire is a ROCKSTAR!  I knew she would do great, but she is doing even better today than I imagined.

Claire was extubated around 2am.  She had a couple of spells overnight where she was fighting the vent and getting really agitated.  The pain meds were only lasting about an hour and she was breathing above the vent well, so they took it out.  Within a couple of hours she was looking for a bottle.  We held off on feeding her until the surgeons came to check on her this morning.  Everything looked great and they said she could eat whatever she wanted.  Daddy is feeding her the second small bottle of the morning right now.

The doctors also took out her catheter and arterial line.  Claire is her usual wiggly self and she managed to dislodge the IV in her foot.  They are going to try (for the second time) to get an IV so they can take out the line in her neck.  Once the neck line and the chest tube are out (probably tomorrow morning) she'll be able to move to the Peds floor.

Thank you so much for the comments, emails and prayers!  We appreciate them so much, and love you all!

Claire is doing great!

Claire is settled in her room and is doing great!  All her vitals are perfect.  She is starting to wake up and we hope she'll be off the vent soon.  The vent been turned down twice, and she has been breathing some on her own.

Sorry for the short update! 

We Got to See Claire

It was a very brief visit, but Darren and I got to see our girl!  They are still getting her settled in her room and it is VERY busy with Drs and nurses, but it was wonderful to see her.  She is puffy but she looks beautiful.  God is good!!

Repair Finished!

The cardiologist and nurse were just in.  The repair is finished and everything looks great!  The holes (ASD and VSD) and patched and the valves look good.  There is very minimal leaking with each of the valves, but everyone is very happy with the repair.  They are giving her blood now and will be closing soon!

Almost Done

The nurse was just in.  Claire is doing great and they are almost done with the surgery.  The repair is complete.  They were able to use her own tissue to repair the ASD and VSD.  The Drs are restarting her heart now to check valve function, and we should know more in about 45 minutes.

Bypass

Claire is now on the bypass machine and they will be stopping her heart and making the incision very soon.  The nurse says she is doing wonderfully!!

Getting started

Claire had a great night last night.  She got a bath, a bottle and went to bed early.  She slept like a rock and hardly moved all night.  I got her up for a bottle around 3:30.  She ate great and was back asleep within an hour.

This morning she was taken to the OR around 8:30 to get her access lines in.  The nurse was just in and let us know that they are almost ready to get started.  They are doing the internal echo and as soon as that is done the will make the incision.

Thank you again for all of your email, comments and prayers!

Pre-Op

Today was a LONG day.  We got to the hospital at 9:30 and didn't get finished there until almost 3.

We started the day with paperwork, length and weight.  I forgot to ask what Claire's length was, but her weight was 11 lb 8 oz, which means she hasn't gained anything in the last 2 weeks.  It's just one more indication that her body is ready for this surgery. 

We met with the surgeon and went over exactly how the repair was going to be done.  This was really helpful as I'd never really understood the valve part of the repair, but it makes much more sense today.  Unfortunately, the only reason I sort of get it is because he drew us pictures, and I can't reproduce them here...The did a chest x-ray, but no echo.  The will do an internal echo tomorrow right before the surgery. 

The worst part of the day, by far, was the blood work.  I told the nurses right off the bat that Clarie was a very hard stick.  They requested someone who was good with babies and the first tech was able to get a little blood from her, but it wasn't nearly enough.  Another tech came down to try and she couldn't get anything.  She started rooting around in Claire's arm and I told her to quit, that we'd had enough for now and they'd have to get someone else.  Normally, that would be the end of the blood work for me.  They had their tries and couldn't get it.  But today we had to get the blood no matter what.  Finally, after a lot of tears, they were able to get what they needed and everything is ready for tomorrow morning.

We have to be to the hospital at 7:30 and surgery is scheduled to start an hour later.  The surgeon thought with how hard they worked to get blood that it might take up to 2 hours to get all her lines in place.  There is a nurse that will update us when all of the major steps of the surgery take place.  The hospital has wireless internet, so I'm hoping to blog about the mini updates as we go. 

Claire is bathed and sound asleep for tonight, and I'm not far behind.  I know tomorrow is going to be a long day and appreciate all of your prayers!

Making a List...and Claire's Heart

...checking it twice.  Gonna find out who's naughty or nice.

I'm not much of a fan of Christmas songs (except those we sing in church), so the fact that I have Santa Claus is Coming to Town in my head each time I work on my list of things to take to the hospital is really starting to annoy me.

Anyway, I know a lot of you have had kiddos that have had OHS or have had extended hospital stays.  If there are things you wished you had with you, or things you were really glad you brought, I'd love to hear them.  We live a little over two hours from the hospital so running home won't be an option.  I know there are stores nearby, but I'd like to be as prepared as possible.  Besides, making lists and packing gives me something to do other than worry for the next few days...

As we get closer to the surgery I've had lots of friends and family ask me to explain the surgery, and I don't think I've done a very good job of it so far.  I'm a very visual learner and I found a picture that helped me see what was going on, and thought is might be interesting to others.

It shows the hole in the center wall of the heart as well as the common valve that they will be repairing.  The center wall will be patched using a synthetic material and the valve will be repaired with her own tissue.

Aunt Susan and Claire                        

One of the few pictures of the three of us

Surgery Date Set

Last Wednesday we took Claire for her monthly cardiology check up.  They did an echo and a chest xray and found that her heart was a little enlarged and there was some extra pressure in her lungs.  Both of these are expected with her heart defect, but the Dr also said it was an indication that we need to get her surgery scheduled.  He presented her case to the surgeons Tuesday and yesterday they called with a surgery date. 

Pre-op is June 8 and surgery is on June 9.

I know that this surgery needs to happen and I know she will have more energy afterwards, but I just hate that she has to go through this.  She has been doing so great with her PT, and her head control gets better everyday.  It bums me out that we have to stop working on her tummy time for 6-8 weeks after the surgery.

At the same time, I'm glad just to get this over with.  The surgery has been hanging over us for about 6 months now, and I'm glad just to finally have a date. It's good to know that after June 9 we can focus on her recovery, and not have to worry quite as much about every little cold or cough.

Right now, I'm not too worried about the surgery.  I know that it will seem more real as the date gets closer, but first we have some fun family things coming up.  Jake (my brother) will be home from his Marine training at the end of the month.  He has a few days at home, and will be having his wedding, before he and his wife and kids pack up and move to San Diego.  I'm so excited to see him and am thrilled that Claire's surgery didn't conflict with the wedding.