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!

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.