1 Week Home and Counting

I am so happy to report that since we have been home, Callan has been doing amazing.  He is getting stronger and looking healthier every day.  A big concern while we were in the NICU was weight gain, but since we have been home (1 week) my little boy has gained an entire pound!!  At this rate he will be a pudgy boy in no time :)  We had our first follow up appointment with the cardiologist today.  She was very pleased with his progress.  His x-ray looked clear, his heart sounded strong, and his blood pressure was good.  We go back in a month for another follow up and a repeat echo.  If the echo looks good, they will take him off two of his medicines, which would leave him just on asprin until he is 1.  It was interesting being back at the hospital today.  Although it was just a week ago that we came home, it already feels like so long ago that all of this happened.  I am still in awe at just how much Callan has endured in his first month of life and thank the Lord every single day for my healthy and happy family.  So far, Callan is an easy baby.  He has a short temper and gets quite mad very quickly when he is hungry or when you change his diaper, but is content the rest of the time.  I can't wait to see more of his little personality come out over the coming months :)

We Are HOME!!!!

Just 2 days shy of 4 weeks in the NICU, Matt & I finally got to bring our baby boy home.  To be honest, it was both great and scary all at the same time.  We have been home 2 days now and are doing well.  We definitely are still trying to settle into a routine.  Just keeping track of all of Callan's medications and giving them at the right times ( around the clock) is like a full-time job.  Rylie is doing amazingly well with having "baby brodder" home with her.  She constantly wants to kiss him and hug him.  Thankfully my mom is still here so Rylie is getting a lot of attention.  We go see our Pediatrician tomorrow and have a follow up with the Cardiologist on Tuesday.  I am not sure what the exact follow up schedule will be the next couple of months, but I know it will be extensive.  Overall, we are all doing great and are so happy to be home!  Thank you all for your unending support and prayers.  We are so lucky to have such great family and friends and really appreciate all your encouraging words.  More updates to come as we settle into life with 2 kids under 2 :)

The Nesting Urge Returns

These last few days have left me with a serious case of the blahs or in a major slump!  So many times I have gotten word and given hope that Callan is coming home only to discover that he will have to stay "a few more days".  He finally got over his infection and his feeding has been much better lately since we introduced medication for reflux.  The latest concern is that he turns completely blue and his oxygen saturation in his blood goes way down anytime he gets mad and cries.  He recovers quickly as soon as he is calm, but it is concerning to me and the rest of his medical team.  His heart is completely fine, so that is good news :)  They are suspecting that it is due to increased blood pressure in his lungs, which is present in all newborns but goes away within a couple days.  They are going to trial a medication to try and resolve it.  The funny part of this all is the medication is none other that the infamous "little blue pill" aka Viagra!  How many people can say that there 4 week old son is taking Viagra.  I guess the medication was originally designed to treat pulmonary hypertension (what Callan has) but was re-labeled and marketed after discovering this "positive" side effect!  Ha!  The drug companies obviously knew they would make way more selling an ED medication than a heart medication.  They will know if it is working within 24 hours, so fingers crossed.  It was my personal goal to have him home before Thursday, which marks 4 weeks since Callan was born.
So, in light of me hitting a wall of disappointment every couple of days, and Rylie crying for me last night and today, I decided to come home today for a couple of hours.  As a result, the nesting urge began surging stronger than ever!  I have gone through 3 bins of clothes (that I currently have no place to put away), set up Callan's bed in our room, and organized extra crib sheets and burp cloths by the bed :)  It is taking every last ounce of will power not to start rearranging furniture!  I am really hoping that by the weekend we will be home because I am going stir crazy over at that hospital and really tired of living out of a suitcase!  I would pay a million dollars to sleep in my own bed with my little boy sleeping next to me!

On Our Way Back Up!

Things are looking up again.  Callan's infection is being treated with antibiotics and his lab numbers are looking good :) As a result of the infection Callan ended up back on oxygen and a feeding tube.  We also discovered that the poor guy was suffering from horrible reflux, which I am told is common in "cardiac kids".  Thankfully due to my 6 month struggle with Rylie's reflux, I noticed the signs right away.  Who says you don't learn from the past ;)  So, today when I walked in to see my little man I was pleased to see that he was off the oxygen and that they are talking about removing the feeding tube this afternoon or evening if his feedings go well today.  If we stay the course, we should be going home in the next 2-3 days.  It is my personal goal to ensure that Callan does not spend is 1 month birthday in a crib at the hospital!  So we have until next Wednesday to bust out of this joint for my goal to be met.  As he gets better and the idea of going home rolls around in my head, I must say that I wonder how I will acclimate back into real life.  I feel like I have been living in a bubble, completely unaware that the world around me continues to go on :)  Thankfully it is summer, so I won't have a million episodes of my favorite shows on DVR to catch up on :)

Infection!

Today was nothing short of an emotional rollercoaster! It started with me packing my adorable going home outfit for Callan in my bag and ended with a new IV, strong antibiotics and several tests. This morning when I went to see Callan I noticed a quarter sized red spot by the bottom of his incision. Initial blood tests showed no elevation in white blood cell count, but as the day went on, the spot grew, a fever emerged and white cell count increased. The doctors took both blood and urine cultures but it will take a couple days to get the results. Thankfully we caught it early, but Matt and I are both very nervous about the infection spreading. These next few days are going to be crucial, so please be praying for healing! We will most likely be here for at least another week while they monitor the infection.

Coming Home Soon!

Yesterday was a big day!!!  Callan got his last chest line out, his pacemaker wires out, his medicine reduced and is off oxygen.  He also got his chest bandage removed.  So, we have officially met all our milestones to go home.  Actually, we got wind today that we might be going home tomorrow :)  We are trying not to get our hopes up, but to say the least we are sooo excited.  For all of you that live close, we will keep you posted about when we are ready for visitors.  Keep your eye on the blog for updates from home and of course lots of picutres.

10 steps forward, 2 steps back

Ok, I know I said on Thursday that I would update on Friday.  Time has a funny way of escaping me here, which is probably a good thing.  Since my last post A LOT has happened.  On Friday Callan's chest was closed, on Saturday his breathing tube was removed, and Sunday and Monday several lines were removed including all of his chest tubes!  He has been taken off all medications but one and the doctor's repeatedly say that they "never have a cardiac case off their meds this quickly".  That's my boy :)  I was hopeful and thinking that we would have him home by the end of the week based on the remaining milestones left to accomplish: all meds by mouth, all feeds by mouth, and off of oxygen.  As of yesterday evening Callan was taking all meds by mouth and all feeds by mouth, but still needed some oxygen.  However, this morning things looked a little different.  Feeding has become the new issue, which we were warned time and time again was the thing that "kept kids here".  While working with the Occupational Therapist this morning we confirmed that Callan is not breathing while he eats, which is causing him to fatigue to quickly and not finish his entire feed as well as aspirate on his milk, which puts him at danger for pneumonia.  Because of this, he had to have a feeding tube placed in his nose so that whatever he doesn't eat via mouth can be given to him to ensure that he gets all the calories he needs.  All in all, his recovery has been miraculous and this is a minor set back.  But, to be honest, I am a little disappointed that this probably means more time here.  I am so ready to bring him home, sleep in my own bed, and get into the new routine of choas that will be my life with an infant and a soon to be 2 year old :)  More updates to come soon, I promise and an updated picture :)

Surgery Success

Today was the longest and most trying day of my life.  At 5:30 this morning Matt & I went to the NICU to hold our precious boy 1 more time before he went into surgery.  At about 6:30 they wheeled him down to the OR where we said goodbye and gave him one last kiss before surgery.  I was quite proud of myself for holding it together until the very end when they wheeled him away.  Then the waiting started.  At 3:00 we got a call from the OR saying that Callan was coming off bypass and that the surgeon would meet with us in 1-2 hours.  At 10 minutes to 5 the surgeon came in to debrief us about the surgery.  The surgery was a success.  They ended up doing the simplest of the 3 options, which is what we were hoping for, which means that they did not have to do a valve replacement.  They still had to do 5-6 different repairs with thousands of stiches and a few patches, but if recovery goes well it means no future surgery!!!  I foolishly thought that the hard part was over, but I was so wrong.  When I saw my baby boy after surgery, I was filled with such an overwhelming mix of emotions: relief, joy, sadness and fear.  I can't explain how hard it is to see your baby with such a multitude of tubes, a breathing tube and his chest still open.  I could literally see his heart beating.  I think it hit me because although his heart is fixed he looks like a very sick baby.  But, we are on our way to recovery.  He is doing very well and will continue to be monitored very closely over the next several days.  Right now, we are hoping that the bleeding in his chest will subside overnight, so the doctor can close his chest tomorrow.  I will keep updating daily.  Please continue to pray for a quick recovery.  We are so ready to bring our little man home, but want to bring home a healthy, happy boy.  Thank you all for all your continued support.

Surgery update

I apologize to all my faithful blog followers for the delay in updates. It has been a crazy couple of days! As most of you know, our baby boy, Callan Matthew, was born Thursday via c-section after a long 40 hours of labor. We were quite surprised to hear he was 11 pounds and 21.5 inches long! Because of his heart complications he was taken to the NICU right away. I didn't even see his face for 18 hours after delivery. Since then he has been doing pretty well. We found out today that the open heart surgery will be Thursday at 7am. It won't be determined exactly what procedure will be done until they open Callan up; we are praying for the simplest. Please be praying for Callan and all those working on him. I will update as soon as I can after the surgery.

This Baby Is Coming One Way or Another!

Well, after much excitement and anticipation, our little man decided that July 4th was not the day to be born.  After almost 48 hours of contractions, everything came to a stop.  I went to the doctor again today and once again the baby looked great.  I had made progress in that I was dilated to like 1/2 a centimeter, but obviously not enough.  So, as it stands we have a c-section scheduled for noon on Thursday.  There is still a change that I might go into real labor on my own between now and then and honestly I am still holding out hope that this will be the case.  But regardless of how it happens, we will finally meet our baby boy on Thursday at the latest.  We have stopped taking bets around the house about when the baby is going to come and have started taking bets about how big he really is.  My bet is 9 pounds, 8 ounces.  I am quickly becoming excited about seeing our little boy and seeing if he will look anything like Rylie.  This journey is soon to be over, only to lead the way into another, more difficult one.  So, everyone stay posted.  We will update the blog as soon as we can and let everyone know the baby stats and how we are all doing.  Thank you all again for all your prayers and please keep them coming!

Can This Be It?

Good news everyone!! I started having regular contractions this morning around 2 am.  They have stayed fairly steady all day, but have not really changed in intensity.  Also, I finally got some antibiotics for what is now a full blown sinus infection.  So, hopefully in the next day or two it will be bye-bye stuffy head, hello BABY!

A True Test of Patience

Yesterday's doctor appointment yielded mixed results.  On the plus side, my amniotic fluid was back up and the baby looked great.  This little man is literally taking up every square inch he can.  It seems like he grows exponentially overnight :)  On the down side, there was no change in my cervix :(  So, the plan is to go back on Tuesday for another check up.  If I have not gone into spontaneous labor by then or my cervix has not changed to be more favorable for induction, then we will have a scheduled c-section on Thursday.  So, we know that by Thursday we will finally have our little boy.  I am still holding out hope that I will go into labor on my own before Tuesday, but we will see.  I may just be one of the 5-10% of women who never go into spontaneous labor before 42 weeks.  My goal still remains to avoid another c-section, but at this point the ultimate goal is for me to be healthy and to give the baby the best start possible.  We have a running joke at the house that they will have to craft a custom incubator in the NICU for this giant baby.  He is going to look huge at 9+ pounds next to all the 2-4 pound premies :)  So, for all of you out there praying for us, for the next 3-4 days, focus your prayers on spontaneous labor ;)

1 Week Past Due

Well, I wish that today I was updating saying that we had our baby boy here and he was doing well, but he has decided to be very stubborn and is not showing any signs of being ready to come out.  I went to the doctor this morning and unfortunately am not even close to going into labor, not dialated or effaced at all and my amniotic fluid is getting low.  So, I will go back on Friday and see if things look a little more favorable.  If not, we are faced with the decision of induction or a c-section.  Either way, it looks as if the easy, natural delivery I was hoping for is off the table.  Please be praying for wisdom and discernment over these next couple of days to help us make the best decision for the baby and myself.  Maybe I will get lucky and go into labor before Friday, it's possible, not likely, but possible :)  At this point my biggest concern is choosing the option that will give the baby the best start to a difficult and physically stressful journey as he undergoes surgery and recovery.

Quick Update

Well here we are 5 days past my due date and still patiently awaiting :)  So far this week, things have been pretty calm, no contractions and no other prelabor signs.  We have had plenty of time to get all of our ducks in a row, clean the house and make sun tea.  So, if any of you have any pull with the stork, please tell him that we a READY!!  I go back to the doctor on Wednesday morning for a check-up & if nothing has changed still, we will talk about induction and other options.  If we are not at the hospital before then (fingers crossed) I will update again on Wednesday.

Tick Tock, Tick Tock!

Well today is officially my due date, which anyone that has a baby knows means absolutely nothing other than the day you start to get really impatient with being pregnant :)  I had my weekly check up at the OB today and the baby is still doing great!  Since I have not had any real consistent contractions or prelabor signs yet, they did not check me.  So for all I know I could be hours away or many, many days.  What I did learn is that as of today the baby is weighing in around 8.5 pounds.  OUCH!!  Of course the baby that was cut out of me what a tiny little peanut and the one I have to push out is a giant watermelon.  So is the luck that I have in life :)  The good thing is that he will be nice and strong for surgery and have a little extra reserve to get him through all that he will undergo.  So the waiting continues.  I am feeling very mixed emotions with each passing day.  I am definitely ready to not be pregnant and to finally meet my little boy, but also very anxious about all that is waiting for him and the emotional toll of watching him go through surgery and recovery. But thankfully, at the end of the day the eagerness to meet my handsome man wins out :)

38 weeks and counting

Another weekly check up and ultrasound yesterday, and another "everything looks good".  Thankfully the baby is passing the biophysical scans with flying colors, so he continues to thrive right now :)  The doctor said that his head is still relatively high.  So I am thinking that we still have some time, but then again you just never know!  Matt & I go tour the hospital's labor and delivery unit tomorrow evening, so we will get to see the last piece of the puzzle involved.  I'm still feeling pretty good, other than being tired.  Rylie is definitely keeping me busy, but it helps pass the time and keep my mind from straying to that horrible "what if" place :)  So, now we just sit and wait for this little man to decide he's ready to enter this world.

Weekly Check

Today I went to my OB for my regular weekly check and ultrasound.  The good news is there is nothing much to report :)  The baby passed all the tests for movement, heartbeat, practice breathing and there is plenty of fluid.  I got to see his little face again and it was looking rather squished.  So as of tomorrow I have 3 weeks left until my due date.  We do not have any further follow up with the specialists; they like us are just awaiting labor.  Matt & I will tour the hospital next week to check out the labor & delivery rooms and fill out all the paperwork ahead of time.  In the meantime, I have a list that keeps growing of things to take care of in the next couple of weeks, most of which are not fun like phone calls to insurance companies and updating my calendar with dates all my bills are due :(  But, most of my time I am spending arranging play dates for Rylie and spending some precious time with her.  She is such a great reminder of how blessed we already are and how much we have to be thankful for.

Meeting the Surgeon

Matt & I have been anxiously awaiting today's big appointment with the surgeon for weeks.  I came prepared with a list of 20 questions and had every hope that the meeting would give us the detailed information we were lacking and help us prepare for what's to come. To be honest, what I got was the exact opposite.  I left with even more questions, uncertainty, and feeling totally overwhelmed with what we are about to face.
The surgeon was great and explained all the possibilities very well, but the reality is that they really won't know what procedure is needed and the extent of the defects until they actually get inside the baby's heart.  He also talked about the recovery and how the baby would be on a ventilator and high levels of medication for days after the surgery.  This was the most upsetting to me.  For some reason, I had never thought about he extent of intervention needed post surgery and am highly bothered by the image of my little man laying there medicated and not breathing on his own.  This somehow really solidified the seriousness of what we are facing.
All in all, it was a good appointment.  The facility is very nice and the staff were all very welcoming and helpful.  Now we just wait & wait some more.  For the next 3-6 weeks I'm going to try to enjoy my pregnancy and time with Rylie.  I will keep posting updates as they come, but again we really won't know what we are dealing with until post delivery.  So for now keep praying for a smooth natural delivery and a stable and strong little boy.

Picture of a Broken Heart

So thanks to my friend Miranda, I now have a great diagram of what a typical heart looks like (image 1) .  In this diagram you will see how the Pulmonary Artery connects to the right ventricle and the aorta connects to the left ventricle.  You will also see the septum separating the two ventricles.

This next diagram is my artistic depiction of the defects that the baby has.  The red portion shows how the Pulmonary vessel is connected to both the right and the left ventricles.  The purple show that the aorta is connected to the right ventricle (opposite of what it should be) and that it is significantly narrowed.  The brown spot represents the hole in the septum between the two ventricles.  For now, the hole is a good thing because it is allowing the heart to self-correct the flow of the blood to the body.  I hope this helps all of you visualize what is different.  I know it helped me :)

The Big Fat Let Down

So today was our "big" appointment at Rady's for the repeat echo to confirm the diagnosis as well as meet the surgeon.  Matt and I have been compiling an extensive list of questions and both spent the day nervously awaiting this appointment.  Well, much to our dismay after the echo we found out that we were not meeting the surgeon today and would have to set up another appointment for that.  We are both feeling very frustrated with this for several reasons including the hassle of going down there and finding care for Rylie as well as waiting who knows how long to get the information that we really want to hear.  In terms of the echo, no new information was given today.  They confirmed the diagnosis and the plan continues as is.  I guess today is just another one of God's many lessons for me through all of this.  Today's lesson: worrying is such a waist of time and energy!  I hate to admit that He has been trying to teach me this lesson for many years.  I'm getting better as I get older at least :)

Potty Training Has Begun

Well, I planned on posting something last night after the first day of potty training with Rylie, but I was sooo exhausted that I went straight to bed.  I felt like I had been run over by a truck.  I guess lifting a 23 pound toddler on and off the toilet 50+ times and sitting on the bathroom floor for hours on end takes its toll on a 34 weeks pregnant body.  Who knew :)  Yesterday morning was rough, but like any good behavior analyst I tweaked my plan after nap and presto, SUCCESS!!  Today was amazing.  Rylie only had 1 accident and she actually pooped in the toilet twice.  I'm sure that is TMI for some people, but I can't tell you how proud I am.  As a parent you have to sit back and laugh about the things in your day that are truly monumental, like a poop in the toilet :)  Hopefully tomorrow goes even better than today.  At this rate, Rylie will be an old pro before the baby comes.  The next hurdle is finding a fold up potty seat to fit in the diaper bag since Rylie is so tiny & eventually will have to go when we are out and about.  Let the internet search begin!

Weekly Check-Up

Today we went in for my weekly check up with my OB.  I am now 34 weeks and will be checked every week including an ultrasound to make sure that everything is progressing well.  Matt went with me to this appointment, but unfortunately Rylie was not being very cooperative, so he had to take her outside and missed the ultrasound :(  Everything with the ultrasound looked good in terms of amniotic fluid levels and growth.  The baby is measuring a little over 5 pounds and in the 80th percentile.  So we are estimating around 8.5 pounds at birth.  I got to see the baby practice breathing on the ultrasound.  It was amazing watching his little chest rise and fall in preparation for those first breaths he will soon take.
The next big appointment will be next Thursday afternoon when we will have a repeat fetal echo and meet with the surgeon.  Matt and I already have a long list of questions for the surgeon and I'm sure will think of more as we get closer to that appointment.
On a different note, today was my last day at work.  To keep myself occupied I have decided to potty train Rylie before the baby comes.  We start tomorrow, so wish us luck :)

The Details

I realized after I made my first post that there may be some of you reading this that didn't receive the whole story about what exactly is going on with the baby.  When I had my 20 week ultrasound, the ultrasound tech noticed that the baby's aorta was slightly enlarged.  We had a few more ultrasounds and the same results were found, a slight enlargement; however, we were told that everything seemed to be fine.  Last week we saw a pediatric cardiologist and had a fetal echo.  Much to our surprise, Matt & I were told that things were far from fine.  We learned that the baby has 4 different heart defects, and that in a nutshell the great vessels of the heart are backwards and that both are connected to one ventricle.  We are still in the process of learning what this all means, but we do know that the baby will have open heart surgery within 48 hours of birth and will be in the NICU for several weeks.  Aside from that, we won't know the full picture until the baby is actually born.  We have a follow up echo next week and a meeting with the surgical team, which I'm sure will shed a little more light on the situation.  The good news is that I am healthy and until the baby is born, he is safe.

Let the Blogging Begin!

Well, as you all know Matt & I are entering into uncharted territory with the news of our little boy's heart trouble.  We have spent the last week coming to terms with what's to come and going through the many emotions that such unexpected news will elicit.  Each day brings a deeper level of acceptance as well as 100 more questions.  For the next 5-8 weeks, we will have several appointments and be gathering a lot more information.  I want to keep all my friends and family up to date with our journey and thought that this would be the perfect way to do it.  That way, I don't forget to call or e-mail one of you by mistake :)  So, I am venturing into new territory and starting this blog.  I hope that all of you will find it useful in keeping up with our family.  Please feel free to share with other friends and family that my be interested in keeping up to date with the process.  For now we will most likely have updates weekly, but once the baby is born I'm sure they will be daily.