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!

Boy oh Boy

October was a big month for Lucy.  Our main focus has been eating and our plan to decrease her tube feed each week until the trial worked great!  The day before Halloween we were going to pull the tube, but Lucy beat us to it.  On Wednesday (10/28) during our speech session, Lucy decided to show off how much she could eat and then right at the end threw it all up, including her tube.
I looked at Laura (our speech therapist) and asked, "can we do it early".  We were all on board and pulled the tube.  We received our minimum intake from the doctor at 540 mL (18 ounces) of liquid and 750 calories.  We knew her intake would not quite be there but would look for small increases each day.  In order to make eating as easy as possible, we used mostly pureed soups and fruit/veggies with  chips as reward.  We are now almost two weeks in and doing great.  We got the go ahead from cardiology to continue as long as her weight does not decrease significantly.  Lucy is currently eating about 3 tablespoons of food at each meal and drinking almost 550 mL of formula and water.

On 10/28/15, we officially became tube free.  It took us 20 months, some days harder than other, but all the work put in was so worth it.  We are so excited to see this face every day.

I am loving not having to worry about tube placement, taping or anything related to NG tubes!

Lucy got baptized on October 18th.  She looked adorable in her dress, but was very unsure of Reverend Meyer, but no tears, so a win!

We also took our first road trip up to Winona to see a soccer game and visit the campus.  My worries revolved mostly around the car ride because Lucy has not always been great in her car seat.  Lucy proved us wrong.  She slept over three hours on the way up there and then over two on the way home.  In between, she was in constant motion.  She did not want to sit still for a moment. Thank gosh my parents came with to give Mike and I some help.  I think she would have broke us had we been alone!

Lucy got her first trick or treat experience as well.  She dressed up as a ladybug and hit six houses in my parents neighborhood.  I don't think she really gets it yet, but when she got a taste of the M&M's she was hooked.  Now she gets 4 M&M's cut in half for dessert after dinner.

The last of Lucy's big news, she will take on a new role next May.........BIG SISTER!  I give credit to any photographer that works with kids.  The first picture was my third attempt and by chance turned out good.  I eventually had to tape the blocks together and by the end (the second picture below) there were tears.  The last picture was second place.  Anyway, we are due May 9th.  Everything looks good as of now.  We will have a level 2 ultrasound and an echo to check the heart around 20 weeks.  We are praying for a healthy baby boy.  Oh yeah, we're having a boy.

Let the countdown begin

In just under month Lucy could be tube free for the first time in her life.  In just under month Lucy could no longer be machine dependent for some of her nutrition.  In just under month I may no longer have to sew loops onto her shirts.  Yes, we are gearing up for another NG tube trial.  Our last trial was seven months ago.  Lucy did better than expected, but by day three she was crashing and burning.  She did not have the stamina to intake all calories needed orally.  We placed the tube back on day four and started focusing on her drinking.  In the last two months we have decreased her tube feeding from  four feeds of  190 mL (six ounces) to three feeds of 160 mL (5 ounces) each.  As we have decreased the tube feeding we have seen her drinking increase from 30 mL per day to almost 150 mL.  In the next three weeks we will look to decrease another 60 mL (2 ounces) each week in hopes that when we pull the tube she will hardly be dependent on her tube feeding.  The official date is October 30th.  I can't wait to see this face again! And the plus is we'll get to dress up for Halloween and take pictures with no tube on her face.  It really is the little things!

The last benefit doing the trial on Oct. 30th is we have a cardiology appointment the following Thursday.  If she does good, we can go to the appointment and have Dr. Husayni take a look and make sure we are clear to continue a tube free life.  If the trial doesn't go well, we will discuss g-tube surgery at the appointment.  All prayers welcome for a successful trial.  I should probably add prayers for less crying from mom as well!

Other than that we have just been doing normal things like play dates (with BFF Jack):

The Advocate cardiac picnic (she also rode the ponies, but I don't have a picture of that)

 She got this bear from the picnic and absolutely loves it!

And the zoo

and of course hair styling.....what's a girl to do without pigtails.

Feeling Normal

I can't believe it's been over month since my last post.  But as you know, no posts mostly means no major issues.  We are basking in the world of normal.  I have been thinking a lot about our first couple months home and I sometimes wonder how we did it all.  Oxygen, continuous feeds, two hour bedtime routines, daily weighing, oxygen saturation checks and questioning every little thing that seems not so normal.  Now we are down to weekly weigh-ins and oxygen SAT checks, plus medication only twice a day.

But my most favorite change is definitely our bedtime routine.  I used to have to rock Lucy to sleep,  about two hours, most of which was screaming.  By the time she was asleep, I was so exhausted.  Then we upgraded to rocking for a half hour, then about an hour of in and out of the room crying and rocking.  Next was setting her in her crib and sitting in the rocker in the dark for half hour to forty five minutes, then trying to tip toe out.  But now....we finish the nightly tube feeding, change into pajamas, play for a half hour and set her in her crib and walk out.  I can't believe how far we've all come.

At the beginning of August we went back for our Cardiac Neurodevelopmental Clinic.  Our first was at 12 months old and this one puts us at 18 months.  We made great progress in most areas.

Here are her report cards:

Area:                                                         12 month                    18 month
                                                                   report                         report

                                                                           Testing Level
Cognitive (play skills)                              10 mo.                         14 mo.
Fine motor                                                8 mo.                            8 mo.
gross motor                                               7 mo.                           11 mo.
Receptive language (understanding)       10 mo.                         21 mo.
Expressive language (talk)                       9 mo.                           15 mo.

Dr. Vanbergen and therapists were impressed with her demeanor, she was fast to warm up to all. Her progress in most categories was great.  There were two concerns, fine motor which showed no progress and feeding tube.  They suggested we transition from developmental therapy to occupational therapy to focus on improving fine motor skills.  The feeding tube was a concern because g-tube surgery cannot happen after the fontan due to the possibility of being on blood thinners and we can't have the surgery too close prior to fontan in order to allow healing.   Since we are delaying her 3rd stage surgery until she is three, we have some time.  This news pushed all of us into high gear.  I filled our speech therapists in following the clinic and we have decided it's time to start pushing Lucy to eat on her own.  I truly believe if the tube is not out by our next clinic appointment in February, we will have to have g-tube surgery.

We will be working with speech and nutrition to systematically ween Lucy from her tube dependency.  We have started by decreasing her 4 pm down to only two ounces.  We have seen some slight improvements in her liquid intake.  Lucy is consistenly taking in about 200 mL (or 6.5 ounces) a day.  Doesn't seem like much, but back in March when we shifted our focus to her drinking Lucy was at about an ounce a day.  My hope is we will be close to pulling the tube around Thanksgiving, but only time will tell.

After clinic, we had hour two month check up with cardiology.  All looked good.  Lungs were clear, the switch to pediatric formula seems to be working.  We were granted a three month break and do not have another follow-up until November.

We will also have our yearly early intervention meeting this month.  We will discuss all her progress and decide what services will need to continue and what we can start to decrease.

The other big news is we have started to look into some day care options.  We feel that it would be very beneficial for Lucy to spend some time around other kids.  I don't think we would place her anywhere until we have mastered her feeding, but it's possible as early as next spring we will be there.  As you can see below.....being with other kids puts a smile on her face.

love-hate

I have a serious love-hate relationship with the NG tube.  It has it's benefits.  The biggest is allowing Lucy to get food without exerting much energy.  We all know Lucy started way behind in the size department and growing can be one of the most difficult things for heart babies.  As much as I want her to eat and drink on her own I have no doubt she would not be as big as she is without it.  At almost a year and a half she is eighteen and a half pounds.  Other benefits include feeding her while she sleeps (although we try hard not to), giving medication and keeping her hydrated if necessary.

But somehow, the hate overshadows it all.  Placing the tube and changing the dressing.  That's it.  That's the hate.  I can't tell you how much anxiety I get as we approach each thirty day mark to change the tube.  I dread it.  I procrastinate.  I make excuses to not pull out the tube.  And every time, Lucy does it for me.  Perfect example,  we are five days over our thirty day mark (it's okay, the nurses have said some parents change it every 90 days) and I am finding excuses.  We finish her night feeds, take a bath and are putting on pajamas when she throws up.  Her tube came partially out and I was able to push it back in, but another wave and the entire tube was out.

It was like Lucy saying 'oh no you don't, it's time to change it'.  Begrudgingly, I took the dressing off and got her back in the bath (cause there was puke everywhere).  We let her sleep tube free through the night, but not without snapping a few pictures.

We had her one month post surgery follow-up with cardiology a couple weeks ago.  Everything is looking good.  Her heart function is good, the aortic repair is healing nicely.  Her oxygen SAT have been in the low 90's.  We were given the go ahead to switch off Tolerex a week after the appointment.  At that time we switched from infant to pediatric formula and I can say it is nice not to have to mix formula anymore.  We go back in a month to check for chyle or any fluid in the chest and then we are hoping for a three month break.  That would put us into November, woo hoo.
I did ask about her third surgery and when we would start discussing scheduling and we got some more good news.  Dr. Husayni wants to give Lucy some time to heal from the last two surgeries.  We will be able to wait until she is three.  This means that we will have over a year and a half to be at home.

The biggest change coming out of this surgery was definitely her water consumption.  Lucy is now drinking on average 3 to 4 ounces of water and 2 ounces of milk by mouth.  We are working on a plan to systematically ween Lucy off her tube.  We have started by decreasing one of her four feeds by one ounce in hopes to promote more drinking by at the next meal.  It would be an amazing present to have Lucy tube free by Christmas.  This time around we are not pushing anything.
Surgery did set us back a month in terms of physical therapy.  We hoped to be walking by our next neurodevelopment clinic, but when she's ready she'll figure it out.  I am interested to see the evaluations of the therapists who haven't seen her for six months.
We will be there next week for the clinic.

Continued prayers for feeding progress and as always for her heart function.

In less than two weeks we are hosting the 2nd annual Have a Heart fundraiser on August 8th at Joe's Bar on Weed Street.  Please join us for a fun afternoon of drinking, raffles and silent auction.