Happy Tube-Free-versary

We made it!  One full year tube free!

I recall the anticipation of pulling the tube last year was filled with excitement and anxiety.  Excited for Lucy to not have a tube up her nose and down her throat.  Excited to not have to rely on a machine to provide her nutrition.  Excited for us not to have to replace that tube every thirty days.  The anxiety came with the failure of this second trial.  Our first trial although unsuccessful gave us information that allowed us to tailor a new plan for Lucy.  This time around a failure meant surgery.  We knew that if we couldn't intake all food orally a g-tube would be necessary.  Surprisingly, the worry wore off rather quickly and by December we were letting Lucy regulate herself.  Measuring everything little thing came to a stop.  However, there are still some residuals from her aversions:
  She still likes to have help when eating.
  She hasn't quite figured out when there is too much in her mouth.
  She still sees mealtime as playtime.

But, she does know when a bite is too big or when she is all done or when she doesn't like a particular food.  She also knows when she eats well, a treat is in her future.

A year in, we have gained three pounds.  We couldn't be prouder of her accomplishment.

Mid October we returned to the cardiologist after a 5 month break.  The week before the appointment we practiced 'echoes' using lotion and a brush.  We talked about laying really still so the doctor could see her heart.  She also gave me one and told me to lay still too.  During the appointment she did exactly that and the echo was completed in a record 30 minutes.  She also sat very still for the EKG and loved all the 'stickers' they let her keep after.  I think Lucy is becoming a pro at this.  When Dr. Husayni came in to discuss echo results, he had 4 residents with him.  Lucy allowed all of them to listen to her heart.  Something which would have resulted in tears in the past.  The outcome:  heart function-good, Aorta-no narrowing, Oxygen saturation-still in normal range.  We earned a three month break at which time we will return to discuss scheduling a catherization to see if Lucy is a candidate for the third surgery.

You read that right....candidate.

I panicked....what if she isn't a candidate, why are we just hearing about this now and what does that mean moving forward.  After discussing with Dr. Husayni, the gist is, there is some criteria for having the Fontan and being able to live the new physiology.  The two biggest are lung pressures and heart function.  If she is not a candidate there are some options, like a modified Fontan.  But until we have the catherization, there is no reason to worry.

In the meantime we are enjoying the fall!
We attended the annual Cardiac Picnic, of course to say thank you to our doctors and nurses.

We goofed around

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And celebrated Halloween

Connor had his six month check-up.  He is growing like a weed.  He is already up to 15 pounds.  That is quite a ways from the four and a half pounds he started at.  I mean that dollar bill is almost as big as him!

We are talking a lot!  Eating baby food which seems to have halted our bottle feedings.  We are sitting fairly well, with some wobbling.  Connor smiles all the time and for the most part sleeps through the night.  Before Connor arrived we had talked about after our hospital time and how hoped he would be a super chill baby.  And boy did we hit the jackpot.  Cannot wait to see him grow into a toddler and interact more and more with Lucy.

another clinic in the books

First, I want to thank all the people that contributed to our fundraiser for LJ's Healing Hearts.  Whether you attended the event, sponsored, volunteered or donated, each of you played a part in making the event amazing.  We were able to raise over $10,000.  I, for one, cannot wait to see how many more families we can help in the coming year.

Last Tuesday, we doubled up on appointments with Lucy's neurodevelopmental clinic and Connor's four month check up all in one day.  Lucy and I trucked down to  the hospital for her clinic session and it was more good news.  It makes me smile when I think back to her interaction with the therapists.  She was so playful and this time around there were no tears at all, a welcome change from last clinic.  She played, talked and sat through the testing.  All the therapists were impressed with her progress.  At 30 months, Lucy is only behind in her gross motor skills.  Her receptive and expressive language took at big jump up to 38 and 40 month respectively.  It is quite obvious as she jabbers all the time.  A couple of her favorite phrases:

'What do we have here'    ...  when looking at a book or toy
'It's hard for me'               ...  when trying to do a puzzle that is above her age
'Hi.  How are you?'          ...  every time some says hi
'Where can it be?'            ...  when we are looking for something
'Hi buddy'                        ...  her greeting to Connor

On a daily basis she cracks us up.  We are coming out of a rough patch of extra crying and neediness as a result of Connor's presence.  I don't think it fully hit her until I went back to work part time that she was going to have to share grandma and grandpa's attention.  What I think helped her out of it was my cousin Mackenzie coming over to spend some quality one on one time with her.  Every week she looks forward to it and they get a couple of hours to play and goof around!  It is a great bond that is developing and I can't wait to see how it grows!  We are also settled into a nice routine which has helped as well.  Connor is on feeding schedule of four bottles a day.   We get him up at 10 pm for his last bottle of the night and he sleeps through the night, for the most part.  He weighed in at twelve pounds, eight ounces and is finally on the growth chart at his check up!  He's making much quicker progress than Lucy and at the rate we are going will weigh more than her (22 lbs) in no time.  We talked a little about feeding and what's next on the horizon....this is all new to me.  We get to start rice cereal in a couple of months and add in fruit and veggie purees.  Tummy time is going well and he is lifting his head up.  I am excited to see all these milestones, but man, thinking about having two mobile kids is quite scary.  He is also quite a talker...I can just imagine the conversations these two will have.

We will update in October after Lucy's cardiology appointment and Connor's six month check up.
A couple pictures to hold you over until then:

Lucy loves the water....pool, puddles, bath  any and all things water

He is starting to develop quite the personality

maternity leave

As I return to work after my full time maternity leave is up, I can't help but compare this time from my leave with Lucy.  In all honesty, I thought this time around would be a cake walk, it wasn't.  It was just different.

Days with Lucy were exhausting both mentally and emotionally while Connor napped and fed.  Lucy was cared for by an awesome staff, while I slept through the night at home.  Connor's night schedule is not something to be desired.  Almost eight weeks in and I am still trying to adjust.
Lucy's crying was so stressful (even in the hospital).  I can still remember my back just getting tight at the first sound of hysterics.  Connor's crying is bearable during the day, but at night I still can't handle it.  I am sure most of that comes from our experience with Lucy.  Lucy's feeding was an exact schedule while I am still trying to figure out Connor.  The nice thing is Connor is getting easier a lot quicker than then Lucy.

What I have come to find out though, is whether your child is chronically ill or healthy, a hospital stay is like jail.  A chain around your ankle making it almost impossible to leave.  Although Connor's stay was much much shorter, those same feelings arose.  I had so much trouble leaving his room, even though I know it's healthy for me.  Even worse is that this carried over when we left the hospital just like last time.  It was hard to do anything except sit at his side. Slowly that has changed and aside from lack of sleep, maternity leave at home is pretty great.

I was even able to squeeze in a newborn photo session.  Here are some of my favorites

We had Lucy's cardiology appointment and it was another great one!  The whole way to the appointment we practiced what she would say to her cardiologist.  He walked in and with a little prompting she said, 

"Silly doctor, my hearts just fine"

And to my surprise, she wasn't far off.  She was amazing during her echo with no tears and for the most part sat pretty still.  Her results:  no appointments for six months.  I can still hardly believe it as I type it.  We don't go back to see the cardiologist until October.  OCTOBER!  All issues are unchanged from her last appointment.  We talked a little about her 3rd surgery and we are still looking at next year.  I definitely am not ready for it.  I think about keeping her confined to a bed and one room and I can just hear her saying, "walk around.  walk around out there".  Maybe by the time she is three we will have some fun activities that can keep her sitting for eight plus hours a day.  But let's be honest, sedation is going to be our best bet!

We are really excited to enjoy the summer with only one trip back to the hospital in August for the neurodevelopmental clinic.  We are hoping that she is caught up in all categories and we can look to stop all therapies.  In May, we unofficially graduated from speech and nutrition because we are officially eating like a two year old.  Praise God!  It's been quite a road, but I am happy to be here.  In each moment you never seem to think you'll get there, so it is nice to look back and see her milestones and be grateful for each one.  We will be looking to move our annual Early Intervention meeting up to the end of August and hope we can graduate from the program all together.  

Lastly, an updated family photo.  We got this one much quicker!

Love me some progress

With Lucy, as with Connor, I had Intrauterine Growth Restriction.  This is a condition in which the unborn baby is smaller than it should be because it is not growing at a normal rate inside the womb.  Clearly our babies have been smaller with a combined weight of seven pounds six ounces.  One of the risks:  hypoglycemia (low blood sugar).  With a blood sugar of 25, Connor had an IV placed and was started on Dextrose 10% at eight ML per hour.  Prior to every feed, his blood sugar was tested and if it was above 60, we were able to decrease the IV dextrose by one ML/hour.  Over the next three days he would be above sixty and then below sixty at alternating feeds.  It was slow progress, but still moving in the right direction.

Friday at his evening feed, Connor finally latched.  We started offering breastfeeding at each meal, then following up with a bottle with fortified breast milk.  If I was not at the hospital, the nurse would offer his feed in a bottle and whatever he could not finish would be through his NG tube.  His eating skills were improving greatly.  By Saturday afternoon his blood sugars had stabilized at 70 and we were able to decrease the IV fluids to 2 Ml/hr.  The doctor decided to leave the IV at 2 ML/hr overnight and by Sunday morning it was stopped.

Sunday morning we spoke with the neonatologist and formed a new plan.  We would allow him to breastfeed and then offer only 10-15 ML of fortified milk after.  We needed to see if he could maintain his blood sugar without giving him a specified amount of milk.  Sunday we hit a huge milestone.  Connor consumed all but one feed by mouth and did three of those feeds by breastfeeding all while maintaining sugars over 60.  We are so proud of his progress.

Today, we adjusted the plan slightly.  First, the NG tube is coming out.  HOORAY!  Only seven days with that tube, it's a miracle!  Next, we are not measuring any intake.  Lastly, we will only take blood sugars every six hours.  If we maintain this with some good weight gain, we can possibly head home by the end of this week.

We want to thank everyone for the prayers.  They worked and we are getting a hang of this whole eating thing.  As much as we love that Connor's sugars are above 60, we really would be more comfortable with them in the 80's.  So prayers that his body can adjust as we alter his feeds would be much appreciated.

Pictures to follow when I get some time to download!

Lucy is a big sister

We'll start with Lucy's last cardio appointment....yes, I was supposed to update awhile ago but things just happen.  In any case, her appointment was great.  She sat through the entire echo without much fussing.  A total bonus.  The results were even better.  Her heart function is strong, the aorta is wide open and the leaky valve (one of the defects that doesn't get much attention) is barely leaking.  Dr. Husayni was also happy with her hydration and eating.  At the time she was four months off the tube.  We got another three month pass and will be back in May.

Day care has done wonders for her personality and her independence.  She has exploded in self play and is really starting to express herself (sometimes in a slightly bossy tone).  We are also working on manners, specifically please.  Although right now she thinks 'saying please' will get whatever she wants faster.  Always a work in progress.

On to our early arrival.  About 5 weeks ago, at 31 weeks, we had a routine ultrasound that was showing very low fluid around the baby.  Dr. Sklar sent me to the hospital for a NST test.  All was good but we scheduled a follow-up with the MFM team at Loyola.  During the appointment, they found two cysts on the umbilical cord.  The doctor didn't seem too concerned but recommended we start weekly bio-physicals to keep an eye on everything.  The next four weeks we normal.  Growth and movement were good.
Fast forward to Tuesday April 12th.  I was back at Loyola for an ultrasound to check blood flow through the umbilical cord, plus growth and fluid.  After the ultrasound, the MFM doctor comes into the room and says 'The fluid around the baby is really low.  I have a call into your doctor, but I am recommending delivery.'  I verified she meant today and, yup, bust into tears.  Not because I wasn't ready to have the baby, but because it was not exactly when we planned.  I left Loyola and drove directly to Elmhurst Hospital making calls to set up arrangements for Lucy.  I was up to Labor and Delivery by 11:30 am and Mike arrived about an hour later after getting Lucy settled with our great friend Kate.  I was hooked up to monitors and we awaited a plan, which would end up being a c-section delivery at 3:30 pm.  We were in the operating room by 3:50 pm and Connor was officially out by 4:21 pm (weighing 4 pounds, 5 ounces and 19 inches long)

  The neonatologist was there waiting to evaluate.  Luckily he was mostly healthy and did not need to be placed in the NICU.  Unfortunately, his blood sugar was low, so he was going to the specialty nursery to be monitored.  We did get some skin to skin time while I was in recovery.  How different from our first delivery.  Connor's blood sugar was 25 (normal is about 80).  He was started on IV glucose and having his blood sugar tested every three hours.  They did not increase as expected so the DREADED NG TUBE was placed to start getting formula in his belly to help raise those sugars.  As much as we wanted to be able to leave with Connor, it will not be the case.  He will stay in the specialty nursery until we can remove the NG tube, maintain his sugars and he can eat on his own.

Our current plan is to fortify his formula so we can decrease the glucose and remove the IV.  While we do this we are working on his feedings.  I pump about 15 minutes before his mealtime and then we try to get him to latch and eat a little.  As of now he has been to sleepy to eat, but has taken a couple of sucks here and there.  The nurses are telling us this is completely normal.  We hope to see some progress in the next couple days and can put together a plan to go home!

Grandpa, Grandma and Lucy came to visit on Wednesday.  No children are allowed in the specialty nursery, so only Grandma and Grandpa were able to meet Connor.  Lucy will have to wait.  Even though she busted in the room saying 'meet baby brother Connor'.

If we could ask for prayers that Connor can raise his blood sugar levels with the added calories and that he gets the hang of this whole eating thing.  WHOA!  Deja vu.  I am pretty sure somewhere in this blog, I wrote that before.  We will continue to update and thank all for the prayers.

Lu is two

We have officially moved into the land of twos.  Lucky for us, there has been nothing terrible about them yet!  We shall see what happens when she has to share us with her baby brother.  She knows he is in my belly, but I don't think she fully understands what it is going to entail.

Lucy's birthday this year was low-key as we decided to fore go a party and instead attend the Hearts for Play event for the Children's Heart Foundation at the end of February.  We did have a cake and sang happy birthday, which she loved.

Probably best we didn't have a party as Lucy seemed to have picked up a bug at day care and had a pretty rough week.  Yes, in three days at 'school' she caught some stomach bug which did a number on her tushy.  The good news is, we really are seeing that she is learning what her body needs in regards to food and drink.  She is actively asking for water when she needs it, sometimes at 2 and 3 am.  During mealtime when she is finished, she just says 'all done' or 'grandma eat it' and it's time to stop.  We are still having to focus on drinking, because she really just want to eat.  We have moved to mostly solid foods and she seems to want food all the time, especially chips.

Starting day care was not as bad as I thought it might be.  My parents drop her off, so I never have to see her cry.  They may tell you a differently about how hard it is to drop her off.  The teachers love her and have only good things to say.  Usually she only cries for about five or ten minutes right when being dropped off, but then is fine the rest of the day.  She is eating well and Laura (our speech therapist) will see her at day care twice a month.  She even got to wear the birthday crown on Monday and the class sang happy birthday.  As you can see, she like the attention.

We made our way to the hospital for the neurodevelopment clinic.  Lucy was all smiles until we walked down the hallway to 5 therapists and Dr. Nader waiting to welcome her.  She immediately busted into tears.  First we went into the therapy room, where she warmed up nicely during the evaluation.  Our hard work has paid off as Lucy is almost caught up in all her delays.  See her report card below.  We still have some work to do in Gross and Fine Motor, but everything else is right on track.  Gotta love her length, 2 percentile.  What a munchkin.

Lastly, we FINALLY got some professional pictures taken.  We did a mini photo shoot on her birthday.  Although she was under the weather, we did get some great pictures thanks to Lulu Moments Photography.  Here are some sneak peeks from the session.

Here she is rocking her zipper for CHD awareness week and Heart Month!

Welcome 2016

Is this what normal feels like.....no tubes, no machines, no weekly appointments?  I love it and in true fashion, just as we get a feel for what normal is, we're going to throw another baby into the mix.

As we gear up for baby number two, we are still focusing on Lucy and her eating.  Lucy continues to gain weight slowly (she has gained .2 kg) since we pulled the tube.  As we embark on our third month, I really thought I would be more crazy about her eating and drinking.  Following her around trying to get her to drink and eat at any time.  Although, maybe I should check with Mike and out parents.....they might think otherwise.  We are slowly seeing increases in food intake and we are working towards eating more like a two year old.  Holy Moly....a two year old.  We have introduced solids.  Some of her favorites include mac and cheese, meatballs and french fries.  She loves to dip...fries in ketchup or her fingers in anything.  As she gets stronger with solid foods (and eating in general) we will be able to look at making foods more heart healthy.  Right now we are bulking up on calories, by adding heavy cream and cheese to anything we can puree.  We will also look to move away from pediasure and towards whole milk.

We are seeing her personality shine through as well.  She is talking up a storm, repeating anything you say.  Occasionally, she will say something on her own.  The other day I caught her at her table playing and singing "bub bub bubble, gup gup guppies".  Bubble guppies is her favorite cartoon.  She repeatedly asks for 'guppies on' as she throws the remote at you.  She loves her Elmo book and knows it by heart.  You can say the first word in each sentence and she will finish it.  She knows her colors and can count to five with some help.  She is one smart cookie.

We have started to decrease therapy and are now down to twice a month for occupational therapy and physical therapy.  I am looking forward to seeing how she fares in her neurodevelopmental clinic in February.  My hope is at our yearly early intervention meeting in October we will be finished with all therapies.  Lastly we are still waiting until Lucy turns three for her third surgery.  We hope that we won't hear any different news at her cardiology appointment at the end of February.

This blog post is late as I wanted to have my level 2 ultrasound and echo for the baby.  We completed both and are happy to report everything is healthy!  The four chamber heart is growing nicely and there are no other issues with growth!  My alpha fetoprotien is high again but at this time they are seeing no indication that is reflects anything wrong with the baby.  I will have my liver enzymes tested again along with a liver ultrasound.  The plan is to follow up after birth to see if there is something else going on (I hope not).

Another heart mom I know had her second child last summer (a healthy boy).  She told me that her second maternity leave was like a vacation!  I am hopeful even with less sleep I will feel the same.  A maternity leave at home in our own house.....how exciting!