Struggles of having a baby with congenital heart disease

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Doctor mixup scare

Ultrasound went without a ditch. No issues as of yet. We meet the obgyn at 2:30 to discuss the results. Current we are waiting for the echo to be done and our specalist just came out and talked with us. She gave us some good news, but I won’t go further until the test is done. Then she said something we were never expecting….

So when you have the baby tomorrow…

Erica and my faces dropped and we just stared at her. After a minute pause, she goes oh wait no I am confusing you with someone else.

I’ll keep everyone posted…

Waiting for ultrasound

Currently we are waiting for the ultrasound. We left the house at 6:30 am and luck would have it, hit no traffic. The problem with this, however, is that now we have 2 hours to kill before our 10:30 am appointment.

We also found out that erica is a “center” patient….whatever that is! So far I think it just means that the staff is nicer to us…:)

Oh well, I’ll update everyone after the ultrasound!

We meet the OBGYN tomorrow

Well, some news on the medical front.  Tomorrow, we are going back to Columbia hospital.  During this trip, we are getting another ultrasound, heart check and meeting our new OBGYN.  We still are going to have our CT OBGYN but the NY one will be planning out when the baby will be born and other decisions in that manor.  This will be good because those are the most important questions for us right now.  It is slightly frustrating going to all these specialists without someone in the middle planning everything out.  This one says one thing while another says something else.  The specialists need to talk to the OBGYN and then she can make the calls of when our baby will be born….or so we hope!  We are also going to find out if she has this vein thing tomorrow (hopefully) so it is either going to be a drepressing or exciting day.  I’ve had enough bad news, so its time to start tacking on the good news, right?

In other news, I believe we have found our new “home” for the middle of September through October.  A co-worker of mine knows a friend that was willing to sublet their appartment to us for 900 dollars a month.  It is in a safe neighborhood and rather quiet.  The appt is on west 52nd street and 10th ave, so everyone needs to keep Erica company when we move there!  Rumor has it, she is going to be bored as hell!  The highlights of the appartment are a spacious living room and a bedroom that we can lock.  We will be sharing the apt with the landlord’s 18 year old son who never plans on living there.  Time will tell if this is true or not…

In Erica health world, she is having some problems with charlie horses. (I wonder what the technical term is for that??)  For the last few days, her legs have been giving her issues.  As of now, she is hobbiling around looking like she needs a hip replacement.  I am sure that this will pass soon, but if it doesn’t, we’ll have to call the doctor and see what we can do.  As entertaining as it is to watch Erica try to get up from the couch, it is starting to get old fast.

Well, wish us luck and hopefully Faith will get some more pretty pictures of herself!

Baby Shower Post From Erica

Thank you so much for the wonderful NJ shower!  As many of you know, I had decided to have two baby showers instead of one.  One in New Jersey, thrown by my mother in law, and one in CT, thrown by my mother and sisters.  After Faith’s initial diagnosis in June, I had such mixed feelings on whether to have my showers before or after Faith is born and eventually decided to have the NJ one before her birth as a sign of our belief that everything is going to work out just fine and the CT one after as a celebration of her successful surgeries. 

 

I could not have asked for a better day or better company!  We ended up with about 35 people there; beautiful weather, and more gifts then Faith will know what to do with!  I’d especially like to thank my mother in law, Joann, who I know worked so hard on putting this party together for us – you did a great job!  My sister in law Lisa also did a fantastic job coordinating games with homemade birdhouses as door prizes made by Faith’s great grandfather.  Thank you Lisa! 

 

Many of my friends from college and some from after were able to attend, including a couple friends who I haven’t seen in way too long.  It means so much to me to have had you all there to share in celebrating Baby Faith; you certainly kept me laughing all day.  I hope each of you knows just how much I treasure our friendship, whether it be a friend that I’ve known for what feels like forever or a friend that I’ve met through some of the older friends you are all very special to me.

 

For all who attended this shower and all that will attend the next one, thank you so much for all your love, support and prayers.  We believe Faith is a very blessed child and know in our hearts that she is going to grow up to be a strong, resilient little girl.  We feel that she is meant to be a reminder to all of us just how much of a miracle babies are and we consider ourselves lucky to have the chance to be her parents.  Please continue to keep her in your prayers.  She will be here in less then 6 weeks and we cannot wait to meet our wonderfully, perfectly beautiful little girl. 

Baby Shower Goodness

Before I go into details, I would first like to thank Aunt Karen Schweikert for painting Faith’s room.  I have pictures to upload and will have a post dedicated to this.  She had painted the room last week, so I just wanted to make sure that I wanted to thank her for this.

With that said, the NJ baby shower went off without a hitch.  We have received several great gifts for Faith and I think that she will enjoy it.  I was surprised on how many people showed up.  Another great feature was that all the males got to go to my sister’s house.  I’ll be sure to have Erica write a little bit on the baby shower in the next day or two.

On medical news, we go back to Columbia on the 19th of August.  We will meet our Columbia OBGYN and set dates (we hope) of when Faith is born.  We will also do another test to see how Faith’s heart is doing.  Lets hope that everything turns out well.

Day Forget about it: Appartments in NYC

First of all, I would just like to mention that I had quit the call center job.  After looking at the calendar, it didn’t make sense to work there.  It would of been a waste of time for them, and more importantly, myself.  I have another prospect of more income down the pipe which would pay more anyways.  I initially didn’t want to go down this route as I deem it as very short term.  Time will tell.  Erica’s second job is doing fine.  She is working out a few kinks in the system, but things seem to be doing ok.

We are also thinking about getting an apartment in NYC.  Ideally, I think I want something in the upper west side.  The budget we are looking for is around 1500 dollars.  It would only be for a month.  Know anyone that has a place available?  :)

As far as the medical news, not a lot is going on.  We will have more information on this hopefully next week.  We are next slated to go to Columbia at the end of August.  Mentally, I think we are doing very well.  The one good thing about knowing so soon is that it gives you a lot of time to prepare.  Everyone has been very supportive so far and I just wanted to say thank you!

Day 32 - Finally an update

Well, here it is day 32 since we found out.  It’s been awhile since I updated but my life has gotten a little bit busier and just haven’t had time to catch up yet.  First, lets go for some non-news.  I had started my second job on monday and I’ve completed the training.  I’m not sure how well this will work out as my first job is demanding enough and to throw a second job on top of it.  Its already caused some strain.  I want to see how crazy Saturday is working there (the “busy day”) and determine if it is worth me keeping this job.  I like the idea of bringing in more money per week. but it is causing a lot of time restraints.  Time will tell with this one.

Erica also got a second job!  She will be doing some ad review for a company out in California.  Its a long story but needless to say, it will be an hour before going to work each day.  Every little bit helps!

On to the medical news.  We have a lot of it!  First off, Erica does not have baby diabetes.  YEAY!!  Erica really loves eating fruit and she has been worried for weeks!  The testing facility said that our OBGYN is a little test happy so other doctors might not of even had us take this extra test.  Well, sometimes it is better to be overcautious than let little things slide.  We also went to Columbia on Wednesday and got some mixed news.  First, the baby looks healthy short of the heart issues.  That is the good news.  The bad news is that she might have some blocked veins going from her heart to her lungs.  The left side is good but the right side may have some issues.  The doctor really doesn’t know right now so it is just something to be aware of at the moment.  If she does have this blocked veins thing, then this changes some things.  Instead of having the baby with us for a few days, they will now ship her directly to the ER and resolve the vein issue.  Depending on the health of the baby, they would do operation 1.  If the baby is not physically capable of handling it, then they would do the veins, then wait a few days and do the heart.  Ultimately, this doesn’t change a lot.  The one thing it does, is I want to make sure that we are as close to Columbia as possible when we are closer to Faith day.  I love helicopters, but I don’t think that would be a good idea to take a trip that day… :)

This is all that comes to mind right now, I’ll be sure to think of some more to put in later…

 

Day 16: Faith might get more pictures!

Well, first of all, I would like to congratulate Lisa for not falling down on national TV.  I didn’t get to watch it yet, but I was told that you could not pick out Lisa out of the crowd.  So sad!  Lisa said she had a blast though and that is all that matters.  The joy of life is trying! 

It seems that there is finally some medical news to discuss.  Just as we thought the RH factor was behind us, it seems that Erica needs another shot.  The doctor’s office almost seems disorganized when it comes to RH because they made us rush to get this shot, and failed to say that we will need to get it in 2 weeks.  We also got tested for RH, but we need to get test again?  Also, if it is just two shots (in our case three because of the amino) what is the big deal?  Something is up but not quite sure what.  Well, regardless, this is just a hassle on us to get the shot but it does only take about 15 minutes to do.  If we need to pick up the shot, then it is a whopping 1/2 an hour.  Nothing to worry about.

The second piece of news is that Erica might have baby diabetes.  There is a fancy name for it that I don’t quite remember but the basic news of it is that Erica will have diabetes until the baby is born.  A co-worker of mine said that his ex-wife had it and it wasn’t that big of a deal to do.  Apparently, this illness will make the baby too big and will require a c-section (not quite sure if that is how it is spelled) instead of natural birth.  These doctors keep telling us that they need the baby as big as possible before the first operation so I am not sure how this will play out.  I know that we will be running this by Columbia before taking any preventive steps.  With that said, we don’t even know if she has it but the first test came back as a possibility to it.  Erica will need to take a 3 hour test to find out for sure.  Since we are going on vacation next week, it will have to wait for when we come back.  The downside is that the test can only be administered during working hours.  Thankfully, Erica’s job has been great in the time off department.  All of this unexpected time must be very hard on them…

The plus side to the diabetes if Erica has it is that we get more pictures of Faith!  It will require more ultrasound pictures to make sure that the baby is doing well.  Our baby book is already overflowing with ultrasound pictures!  Well, the more the merrier?

Day 15- Wish my sister luck

Today is the big high-heel race!  Everyone wish my sister luck!  Hey - you never know?  I had wanted to setup the slingbox to watch it while at work but I didn’t get a chance.  Tivo is doing his job though.  Go Tivo go! 

Erica’s tummy is starting to feel better.  It still hurts when she touches it, but not as bad.  I’m really curious of what caused this, but I don’t think we will ever find out.  I guess it is one of those things eh?  As far as other medical news, we really don’t have much to report.  They had originally wanted us to meet with the doctors next week, but we are going to be on vacation.  They are going to push it back to the week of the 21st then.  Where did July go?

On the job front, I met with the HR of the part time job place.  She seemed nice and we went over the position details again and just confirmed that I really wanted to work there.  Everything seems good on that front so it is just a matter of waiting then.

Day 14 - Are you awake?

Well, the forth of July has taken me away from the computer for a couple of days.  First let me get to the good news!  We heard from the doctor regarding the amnio and there appears to be no other issues with Faith.  The only problem is the heart condition!

The long weekend was great!  On the forth of July we got to spend it with my family and they have been very supportive.  It helped Erica a lot to be treated “normal” with the people that didn’t really know but was able to go into more depth with other members of the family. 

We also was able to catch up on some carnival bingo on saturday!  Erica cleaned up the joint!  It seems that Faith finally got some good luck in the form of bingo prizes.  The only two significant prizes to note were 25 dollars to best buy and 25 dollars to Big Y.

Now for the weird news.  At 2 AM this morning, I got a “hey are you awake?” Turns out that Erica was getting stomach pains where the amnio was done.  It was different pains than before and we were really concerned.  These problems with the amnio should of been resolved by now.  We called the high risk doctor at 2:30 AM and waited a 1/2 an hour to see if he would respond.  He did not so we went to the ER.  They were very nice but didn’t really do much.  They hooked Erica up to a heart beat/contractions monitor and had us sit around and do nothing for an hour.  Then the doctor came, looked at the graphs for 5 minutes and said we could go home.  He didn’t really even do any tests or really look at anything.  I said that this doctor was like a lump.

We heard from the high risk doctor at 8 am and he wanted to run some tests as well.  He brought us in at 5 PM and actually did testing.  They made sure that the fluid was in tact and ran a bunch of tests.  The end result was the same, but it is all about presentation!  We also got a lot of faith pictures as well!  One day I will have to scan them all in.  The one thing that we continue to do is whenever we get an ultrasound, we ask for pictures.  It is our baby after all, why can’t we get a picture of her?  Erica found one comment that the doctor made.  He said in a year from now, he would like to refer other patients that has this condition to us and let them know how the procedure went and so on.  This made her feel good because that means that he thinks that the baby will be alive for at least a year and so on.  Everyone is pretty positive at this point!  Only 3 more months to go to prove everyone right!