The Verdict- Heart Surgery

We have been on the edge for over a year... waiting on that Echocardiogram result that would either clear us or tell us that there is definitely surgery in our future.  As you know, last year there were major changes in the results that had us repeat the Echo 6 months later. After that we were free for another year. This year not only had the pressure changed again for the worse but there is now a leaky valve. So the verdict is that  Josh will be having open heart surgery to remove the membrane;.

We haven't received the call from the surgeon yet (just his cardiologist). The good thing is, that Yale Cardiology takes the results to the group, and a group of 10 cardiologists determine whether the results indicate surgery. It was unanimous. So while I can't tell you all when, as we don't have a date yet, it will be this summer. I am shooting for July so that he has lots of recovery time before school starts.  Once we have a date we can tell you more. We do know that he will be at Yale for 4-5 days and home recovering for another 7-10.  Mostly normal activities after 2 weeks.  While we knew that this was probable, getting the news still hit me hard.  I have my big girl panties on now.  We will need lots of prayers, positive energy, blessings.. whatever it is you all do. Love you all, thank you for being my friends and support!!

Tired of being strong

Sometimes always being strong and stoic takes it's toll. I sometimes want to scream and cry "why us again". "Hasn't he been through enough?" Enough already. While we know that the preemie journey can be rough sometimes, as they get older you think you are in the clear. You have that false sense of security. And then, BAM. News that can rock your world. I am always the positive one right? There are other moms and dads out there going through far worse than us. We have met these people. But at this moment in time none of that matters. All that matters is the here and now. The having my own freaking pity party to which only myself is invited because no one at this moment (Besides my husband who also ALWAYS keeps it together) really knows what is going through my head and how angry and frustrated and scared I am. I hold it together because that's what I have always done, it's the only way I know how. I cry alone because damn it, I don't want to burden anyone else with my feelings. Everyone has their own shit, they don't need mine on top of their own. I know my friends don't mind, but I mind. I have always done things on my own. Appearances can be deceiving. I can put on the big girl panties and deal with it the way I always do but deep down, I am freaking out. I don't want my baby to have to go through this. I have watched and held him after two major surgeries, one of which he was given a 50% chance of making it out, and the second was not a piece of cake either.

 Anesthesia scares me. Breaking apart his chest to get to his heart, freaks me out. Stopping his heart so that the can remove the membrane scares the crap out of me. I know that we have 6 months of thinking about this and praying that when we go back the news is good. The reality of this is that if not now, it probably is going to happen eventually. I was living in that fantasy that we would never have to do this and that is usually not my style.

So the big girl panties are back on. I am sure I will have my moments in the next 6 months where I quietly lose it, and I will hope and pray that when we go back to get the tests again that all is good. And in my mind,I will prepare for this so that I am not blindsided with something unexpected.  Thanks my friends for listening to my rant. Most will NEVER see this as this blog is not read as often as it used to be. Few will and get a glimpse of the real me, the one who is not always in control.

Surgery in our future?

I am not sure how many of you know that Josh has a heart "condition" called a subaortic membrane or discreet subaortic stenosis..  The short of this is he has a flap of skin growing across his aorta, which can restrict blood flow.  He was diagnosed in 2010 and we have been getting it checked yearly.  It was moderate and we were hopeful that it would stay that way forever with no significant changes.  But we were told and had read up on this and knew there was a strong possibility that this would/could worsen.

We got that news yesterday after Josh's 4th echocardiogram.  Dr. Fahey couldn't read it while we were at our visit so he said he would call us with the results.  When he did it was not what we wanted to hear. The good news is, we will do another Echocardiogram in 6 months, the bad news is, there is most certainly a surgery in Joshua's future.  Super bad news is, surgery for this is open heart - this means that in order to even get to his heart they have to go in through the rib cage and breast plate. So they will have to open the breast plate to get to his heart. They will also have to stop his heart during the surgery in order to operate and remove the membrane.  And lastly, the super, super bad news is that this membrane can grow back.

So now for the best case scenario- it was a bad Echo (the changes were significant) and we can put this off for a few years. The worst case scenario, after the next Echo in 6 months, we will be looking at surgery at Yale. I wouldn't put him in any other hands but with the rising cost of healthcare and co-pays and Yale is not in our Network, so money will most certainly be on our minds as well as Josh's health and any ramifications of having open heart surgery.

So that my friends, is the deal.  Now we wait (as we all know that is the hardest part-- the not knowing) , and my motto is always prepare for the worst, but hope for the best.  I can't be delusional and think rainbows and unicorns - I am a realist at heart and would rather prepare myself for what can happen and he happily surprised when its better than I expected.

Joshua's First Video

12/19/07 - found these that were never published.


We just used our video feature on our camera. Takes lots of memory, but cute video, except it keeps trying to focus. Here is Josh... in full action. They are not as great as I wanted them to be of course! He is yelling now, when he is not quietly babbling. It's cute but not at 4am when he is usually yelling at someone... we are not sure yet who!

Wow. I really wish I was a bit more up to date!  Joshua started Kindergarten this year. He is doing really well and starting to get better at some of those areas that he is slow in. His writing is getting better and he is working on coloring instead of scribbling. I guess with everyone on Facebook these days I don't feel the urge to update here as we have been updating on FB. Bad I know - but not even sure if anyone even looks here anymore. So here are some pictures.

Photo Card

View the entire collection of cards.

Merry Christmas to ALL!!!

Look who's 5!!

Time flies

Wow, my posts have definitely gotten further and further apart. I only posted twice in 2011. Where has the time gone?
Josh is doing awesome and that's probably the reason for the lack of posts. Pre-K has been amazing. Josh is one of the only kids reading in his class but he does have issues writing so we are working on that. I ordered some things to help with him holding his pencil. Hope they come in soon, I can't wait to see if they help. one is called a claw and then the triangle crayons and another thing that you can put on the pencil. Will take pics when they get here.
We had his cardiology appointment and the subaortic membrane hasn't gotten any worse which is good news.  We will have to keep an eye on it. Every year for awhile... then every 2... even as an adult they will have to check it.. so we will be good friends with the cardiologists!

Other than that things are wonderful. He is thriving and keeping us entertained every day. The cooler is "refreshing" - he is always looking for something in "particular". Here's to awesome vocabulary!!

Preschool and PottyTraining

Both of my boys were late trainers. Josh just wasn't interested. Not like I blame him... honestly.. no worries.. go in your pants and someone will change you. No stopping what you are doing.. what a life! Grandma started a few times but he just wasn't ready. We tried the underwear thing, but frankly wet undies and pants didn't bother him. Neither did soiled ones. Half the time he wouldn't even tell us he wet through or had poop in there. It was frustrating.  So when it was preschool time we let the teacher know that he wasn't fully trained. If we told him every hour to go, he would go,  but he wasn't telling us when he needed to go.. ever. We were as trained as any parent who had a kid who didn't want to be trained. If we failed in our task, he would just go in his pants. So the teacher said, then send him in underwear every day and extra clothes.  The first week was about normal. As long as someone told him, he was good. After that it was like a switch... he started telling us when he had to go, pooped on the toilet and night trained all at once.  For the past 2 weeks, absolutely no accidents. I am impressed to say the least!

Preschool has been good for Josh. He needs that social interaction, however it has not been without drama! Apparently some of the girls called Joshua a cheater. I have no idea of the story behind that, I am sure this was probably not huge but with a child who has not napped (naps have been reduced as he has afternoon school) he had a total meltdown over the incident. But he has made friends and this is all good.  He went into Pre-K with a head filled with knowledge already. Thank goodness for Grandma! He knows all of his colors,can count to at least 20, knows his alphabet, can spell his name and can read a ton of words. But he is having issues in the writing arena. He still scribbles and the school has noticed that he may have some gross motor issues which is no surprise. So we will work on everything that needs to be worked on but he is reading at 4 1/2 and I am so proud!

Happy 4th Birthday!

Yesterday I "reminisced" about the days before Josh was born. I'll continue it here.


We had hoped for even a few more days. What's a few days in labor? The contractions weren't regular so it could happen right? Well it was not to be. They had sent me back to a regular room and we had dinner (not the best idea considering LOL)  Later in the evening they put me on the monitor for a 30 minute check of his heart rate, this was all routine. They noticed that every time I had a contraction, his heart rate dropped. This is called decelerations. They thought that because there was very little amniotic fluid that when I contracted, the cord was getting compressed.  They warned me that this was not good. If it happened 4 times in an hour, we were going to have to deliver. It was about 3:45 in the morning when they decided that this was going to happen. I won't lie. I cried. I was scared. We knew he was going to weigh a little over a pound. We also knew that he only had a 75% chance of surviving. But we did have some science on our side. I had gotten steroid injections as soon as we hit 24 weeks to help strengthen and develop his lungs.


C-section was the only option. This scared the hell out of me. That wasn't even in the plan, but then again none if this was. It was an urgent decision. The prep was fast and in we went. Dave was amazing. As scared as he was he was trying to amuse me at the same time. Josh was born at 4:42 in the morning. They took him away  as soon as he was born. I got the "it's a boy" before he was taken to be worked on. Dave got to see him a few times before me. It would be another 10 hours before I could get out of bed and get to the NICU. What a motivator I tell you!


I wish that no parent ever has to go through what we did. And even this was mild compared to some. There are some babies that suffer terrible brain damage due to bleeding in the brain and some that have issues like CP. We have been so blessed.


Josh is now a happy, healthy 4-year old with a few minor issues that frankly are not all that bad considering where we started.


So


HAPPY BIRTHDAY JOSHUA DAVID HARRINGTON!

Valentine's Day - Not what you think

Today is Valentine's Day. It's truly a Hallmark holiday. I believe you should tell the ones you love that you love them every day - it's nice to get a card or a present, but why today? Do this for me on a day that I am not expecting it... that would be better. Valentine's day has other memories for me.

Having said that, it was today, 4 years ago, that we knew we were going to have a baby at 24 weeks. I can almost remember it like it was yesterday. I had been at John Dempsey for a week already. My water had broke on the 12th. Now for some, this would be okay. This is called PROM (Premature Rupture of Membranes), and there have been some ladies who have had this for months and delivered full-term. I was the worst case scenario, I was already having contractions and had been for a week. The only reason I wasn't was because they had me on meds to stop them. Once your water breaks, they take you off those drugs. It's too dangerous, risk of infection, lots of reasons they do this. So having my water break was the worst news ever. It meant that we were having a baby. If not that day then soon. Once they took me off the meds, it was waiting. It took about 12 hours for the contractions to start again. I had high hopes that it wasn't going to happen and was deflated when it did. That was on the 12th. Dave had decided to stay home that day. There was a storm coming, and he and Arran had been with me all weekend. Contractions meant that I was going to deliver sometime very soon. Of course he changed his plans to come up. By today, we were waiting. They had me on the delivery floor for most of the day but the contractions were still not close or regular so they sent me back to my room. Valentine's day went by without delivering. One more day in utero was a blessing.

Late Christmas pictures

Cardiologist update

We went to see the cardiologist on Wednesday and so far so good. The subaortic membrane doesn't seem to have progressed any. The narrowing is "on the cusp" of moderate.. still mild but close to being called moderate. It's still a wait. They will see him in another year and see how it's progressing. At this point, it's just all waiting. Next visit if all is still well, I will find out what exactly this means for Josh for the remainder of his life... most likely yearly cardio visits - there is always the possibility of it progressing. We have to watch for warning signs.. fatigue, blueness anywhere, especially around the lips, unusual paleness the usual which in Josh's case, could be heart or lungs! So we wait and will update on this subject in another year!


This has been a really rough sickness season for us. Since we put Josh in daycare (and pulled him out 8 weeks later) he has had something pretty much constantly. Runny nose is the best of it. Croup and pneumonia is the worst. Off to the pedi today to find out if this is just a cold or something worse. I don't take him for everything and it's tough because I have to make that judgement call... is it bad enough to take him without being that mom who cries wolf every time. With his history I am sure no one would blame me for rushing in there every time he gets a cough, but I do usually wait to see how it progresses. When it's a Friday, I feel like I should do something because the weekends are tough to get in to see someone.. and what if it gets worse? Then if I don't take him right away and he gets sicker? See the dilemma? Anyway, that is my rant for today.

Halloween 2010

---

Dave and I were looking through costumes back in August when Joshua saw them. I figured maybe a pirate like Captain Feathersword or a cowboy.. but Josh saw the knight and was hooked. For months we had been hearing that he was going to be a "knight in shining armor". Dave was teasing him telling him only if mama buys the costume. So I ordered it and darn it if he isn't the best looking knight in shining armor ever!

This is the first year he is really interested./excited about any of the holidays. His birthday was the first (of course he wants a birthday like... every day!). So Halloween was fun.. mostly. He went to one door, knocked, said Trick or Treat and really he was done. We did go to about 10-15 houses... but once he did it, it was done. He doesn't eat much candy so there isn't that aspect. I have really tried to keep most of that away - he loves fruit so why give candy?

Daycare is over for now. Bronchitis and Pneumonia in the course of 2 months, then he got another cold (which didn't turn bad thank goodness!) . I don't want him on a antibiotic all winter so we nixed it. It's not like we need to put him in. He has two wonderful grandparents who love him to death and take care of him every day. This was just for some social skills. He did love it, but his health definitely comes first.

So the next thing we wait for is the cardiologist in January. His pulmonologist seems to think the murmur is getting worse.. I am praying that it's not, but we will see. All we can do is wait and hope that this, like everything else is another bump in Joshua's road.

We are going away for Thanksgiving. Renting a cabin in the woods in Vermont with friends. It's going to be a wonderful time. I am sure the next post will not be until after that. So have a wonderful holiday all. I give thanks just about every day - for my friends, my family and especially my wonderful, beautiful miracles (my children). I am truly blessed. We are especially thankful at Thanksgiving. So, be thankful for all of the great things that you have in your life and try not to dwell on the negative.

Preschool/Daycare update

So far it's been a great ride. I am being sarcastic here! After two days of daycare, Josh had a fever and cough. He missed the next week because of the fever and turns out it was bronchitis. Amoxicillin for 10 days. Goes back to daycare and by the following Saturday.. pneumonia. This was another antibiotic, breathing treatments and prednisone.

So, he is back in, for now, but if there is one more major illness we are probably going to pull him for the winter and try again. While I totally agree that I need to expose him to germs, I am not willing to deal with all of the major lung issues. Most kids get colds.. I could deal with that if it was just a cold. Seems all of Josh's go to his lungs (of course). Hopefully sometime in the near future, his lungs will get stronger and we won't have to deal with so much of this.

Monday night we went to the big March of Dimes fundraiser - The Signature Chef Auction. What a fun evening. Great food, great company (our friends went with us) and we also got to meet the next Ambassador Family for our walk. They are still not sure that they want to do it, but I think they are coming around! IF you ever get a chance to go, it's a really great evening and Marc (the MoD Director) is amazing. We love him!!

January we find out what is going on with the Subaortic Membrane in Josh's heart. The pulmonologist seems to think it's getting worse. I am hoping for the best and keeping my fingers crossed. She mentioned a cardiac catheter.. while this is better than open heart surgery, anything dealing with the heart scares me, so we will pray that it at least hasn't gotten worse. One of my big "issues" is that the pulmonologist can hear this, and if you listen with your ear you can hear the murmur. Yet any time Josh goes to the pedi, no one ever mentions this. Perhaps it's because it's in his chart and they know I know, but it just seems weird. And we saw a ped on-call who had never seen him, and he never mentioned it. Strange.

Well that's all for now. We'll of course update with Halloween pictures when the costume finally comes in. I am so glad that this year Josh is finally getting exciting about the holidays. This is the first year that he has really shown any interest in any of it so it should be fun!

Daycare Woes

Well, Josh had his first 2 half days at daycare Thursday and Friday. By Saturday evening.. fever and cough. I had really hoped that his immune system would have been stronger, but I knew deep in my heart that we would probably be dealing with sickness. I had just hoped it wouldn't be this soon. My hope is that we get this all out of the way before kindergarten... I know that is still 2 years away but I would hate to have him miss a bunch of school. This is why we started getting him around other kids now and not waiting, although I am still wondering if putting him in at the beginning of RSV and flu season is the best decision I have ever made. If he continually gets sick, then we may have to re-think this for the winter, but I'll give it a few months and see what happens. My other preemie mom friends have said that yes, they get sick but it gets better (Jay and Syd have both been in the same boat). I'll try and be better about getting posts up. Gets much more difficult when they are older!

On a better note... Joshua has been telling everyone what he is going to be for Halloween.. a Knight in Shining Armor... he has never been really excited about any of the holidays.. this is the first.. I think Christmas is really going to be a blast this year. Before now, he hasn't been interested.. this should be GREAT!

Glasses?

Well we went to the eye doctor who said that Josh's vision is great... however, he has astigmatism in both eyes (genetic.. me too!) and that because one has gotten significantly worse since his last exam she wants him to have glasses to potentially correct the issue. Astigmatism is an irregularly shaped cornea.. where most peoples are round.. mine, and now Joshua's is shaped like a football.. this causes blur and distortion in distance vision.

So we ordered glasses. Holy cow. I know how expensive they usually are and I do have some limited insurance for glasses for Josh (I have a different plan because I know I need glasses and so does Arran). So this was a shock for something he will outgrow in about a year. We should have his real pair by Wednesday/Thursday of this week.

March of Dimes walk is tomorrow. So exciting! We are the Ambassador family so I have to speak (and need to work on my speech today!).. and I was informed that I am also the PR person for the day.. me who hyperventillates during speeches? Marc is CRAZY! But I will do my best to make everyone proud.

Have a great day all. Will post more pics when the glasses come in!

No more bottle

Well we fnally took away the bottle. It was time. He is 3. But I know it was for comfort and that was the hard part for me. I was surprised. No tears. We told him they were all dirty. It's been a week and he still asks for it, but doesn't get upset when we don't give him one. Problem is, he has a REALLY tough time settling down for nap and bed time. The bottle was his "woobie".. security and comfort... and we haven't found anything to replace it. We are working on it... trying to find something else for comfort. It takes him more than an hour to settle down. So big boy bed and no bottle. In a few weeks we will hopefully start potty training. I don't want to make too many changes all at once though. The potty training, while important can wait a little bit if I feel that all of these changes at one time are too much. Transition is good!

All in all though, he is doing really well. He has a great memory and loves electronics He still watches the darned Direct TV channel. That boy can recite along with the commentator and probably knows more about how to operate the remote than I do! I am certainly not worried about his cognitive skills! He goes for his 3-year physical in a few weeks so we can see where he is on the growth charts. I am thinking still in the lower end. His cousin is in the upper end and boy they are worlds apart in size. Connor is like a foot taller and only 6 months older (Actual age). But we know he is going to catch up eventually. Small men do not run in either of our families.

If you haven't donated to the March of Dimes, please consider it. We know that our little man wouldn't be where he is without it.. and of course all of my other little preemie friends who I believe we will meet someday. They are always in my thoughts. I feel a part of their lives as I hope they feel they are a part of Joshua's.

I spoke about our journey at a March for Babies kickoff. I hope that we can inspire others to join the cause. It's always a difficult speech because I feel that our journey also includes Emilee... and talkinig about her always brings tears to my eyes. She would have been 4 this year.

Anyway, be true. Be real. Thanks for reading and being a part of our journey. We love you all!

Happy 3rd Birthday!

I can't believe our boy is 3. Man how times flies and I can't say that the past 3 years has been all fun. Mostly.... but not all. That first year was a ride. For those of you just tuning in, if you have a few minutes go back and check out his beginnings. for those who have been with us all along.. thanks for being there for us. We are happy that he is doing so well.

Josh is a happy boy most of the time. He is just hitting those "terrible 2's". Even that has been delayed a bit. Lately he doesn't like anything and tells you so at every turn. Things he liked yesterday, he doesn't like today and it seems like the list gets longer. He pretty much doesn't like anything! Except cake LOL. He LOVED his cake. Still not totally into the presents but that's okay. Not a materialistic boy that's for sure.

But he is growing and exploring and being a kid and we are enjoying every minute of it. He is "besides hating everything" a good natured kid. Sings and dances.. hums the Wii theme (yeah we know, that is kind of strange LOL) sings all the Wiggles songs... there is nothing wrong with this boy's memory.

So Happy Birthday my little man. We (along with lots of other people... some you have met and some are just in our hearts) love you very, very much!!

My beating heart

I can't believe Josh is almost 3. 3 years ago I was on bedrest hoping for the best. Now look at him!

During the last few visits at the pulmonologist, she mentioned that she heard a heart murmur. This time she suggested we go and see a Cardiologist to be sure. So we saw yet another doctor.. Dr. Fahey (I have heard much about him and he is anther Yale doctor). So we saw him today. He took a listen and said that what he was hearing was not an "innocent" murmur... and he wanted to do an Echocardiogram which they did right there and he stood by and explained everything and what they were seeing. Well, turns out, Josh is still throwing us curveballs! He has what is called a subaortic membrane. It's better to read about it,so click on the link. Bottom line is that we are waiting to see what happens with it. It is not close to or covering the aortic valve or obstructing his blood flow.. so we are just watching and waiting. But it's yet another thing we have to think about. I am not worried, I am going to think positively. This child has beat the odds before and will again.

Other than this last bit of news Josh is doing great. Playing the Wii like a champ.. (Okay maybe not a champ but he did manage to erase all of our saved data). Watching him play sometimes is very frustrating as he doesn't like to finish one before he starts another. His sentences are getting much longer and his memory/retention is awesome. We are such a lucky family!

By the way, the March of Dimes Walk for Babies is now up and running. We are striving to be the #1 Family team again. so please help if you can Every little bit helps. Save your change for the next few months The money isn't due until the walk. Click on the March of Dimes "widget" on the side of our blog.

Love to you all!!
Dianna