Diagnosis

So we went to the cardiologist yesterday.  For an hour I lay on a warm bed in a dark room and watched my baby and tried not to fall asleep.  How in the world the doctors and technicians see anything is beyond me.  Especially something as little as a heart in an 18 week old fetus.  They measured every wall, listened to every individual valve, watched every bit of blood flow.  It's incredible.  Miraculous really.

Which brings me to my next point.  Chopper and I are not praying for a healing miracle.  We don't feel right about that.  We are praying for the miracles that are already occurring: amazing doctors and incredible technology that will help us prepare and give our son the best chance at life that he can possibly get.  We are praying for the miracle of insurance to help cover costs.  Most of all, we are praying for the miracle of being able to have understanding, strength, and peace as we climb this very large mountain.  We are already receiving that miracle.

So on to the diagnosis.

So this is the heart.  There's one thing I would add to this picture -- a ductal arch that diverts blood from the right ventricle and pulmonary artery just away from the heart because as a fetus, the blood does not go to the lungs. That's important. 

The primary diagnosis is called Pulmonary Atresia.  The pulmonary artery takes blue blood from the right side of the heart to the lungs for oxygenation.  Aaron's artery was there but something has caused the pulmonary valve (from r. ventricle to artery) to close and the pulmonary artery itself has narrowed significantly.  In utero, the baby doesn't need blood to go to the lungs so it's shifted around by a vein specific to a fetal heart called the ductus something or other.  In a normal baby, that closes after birth once blood starts going to the lungs.  The lack of blood flow to the lungs after birth will cause a blue baby because of all the unoxygenated blood running through his system.  Like literally blue.  I'm not sure how blue, but blue.

If that were the only problem, they would put a shunt in or replace the branch of the artery that's closed and we'd be good.  Unfortunately we have some complications.  The right ventricle has developed some coronary sinusoids which are present in all babies but close after a while.  Because of the build up of blood that can't get through these haven't closed all the way.  Our Dr. kept referring to them as little lakes in the wall between the r. and l. ventricle.  The tricuspid valve between r. atrium and r. ventricle is also not working properly.  Basically the blood that comes into the right side of the heart has nowhere to go and is damaging the walls of the right ventricle.  If a shunt is put in, the change in pressure on the right side would cause the baby to have a heart attack and die.

The Dr. has asked us to seek a second opinion particularly regarding the coronary sinusoids because they are causing so many difficulties in options for repair.  Her first choice for that 2nd opinion is in Philadelphia but her 2nd choice is here in Dallas.  I think that we're going to consult that 2nd choice and then if their reports conflict or if she even feels we need more information then Philly will be our tiebreaker option.

Right now we're looking at 2 options, neither of which are a fix but more of a what can we do to give him some chance at life.  The sinusoids may change that later on, particularly if they get worse.  But right now option #1 is a series of 3 surgeries.  #1 happens when he's 3-4 days old and the lungs are inflated and have descended into the chest cavity.  He would be on drugs from birth but at that point they would go in and put a shunt in the ductus to keep it open after birth.  Stage 2 is 4-6 months and they would connect the pulmonary artery to the superior vena cava so that blood flow can get to the lungs.  Stage 3 is sealing off the right ventricle.  He would have a 3 chamber heart for the rest of his life and I'm sure follow up surgeries as he grows but his blood will also be fully oxygenated at that point so he won't be blue anymore, he'll be pink like the rest of us!  Option #2 is heart transplant.  That's the option we may have to take if the sinusoids get worse.  What I hate about that option is of course the high risk of rejection but it really makes me feel horrible thinking that someone else's baby won't make it so my baby can have a new heart.  But then, if  we end up in those shoes, we would donate the organs for sure.  Well, no one will want the heart!!  But everything else looks good!!!

So that's it!  If you have questions don't ask!  I'm still trying to understand it all myself!  :)

Despite all this -- I still love watching him on screen and he is a mover!!  Both ultrasounds we've had so far have had a hard time with the pictures because he will not hold still!!  We know he'll never be a star athlete (although that's genetic, it really has nothing to do with the heart defect!), but he is active.  I hope that means he's a fighter!  And for now, he's safe right here and I'm really grateful that I don't need to stress about the actual pregnancy but can get ready for what comes after!!

Pumpkin Love

Last trip for a while.  Our membership expires at the end of the month and we're not going to renew.  I'm sad about it but with everything that's going to be happening we just won't get there enough to make it worth it -- if it all!!  Yesterday's weather was also beautiful!!  I would say it's finally cooling down but I think it was a fluke and is supposed to be back into the 90s this week.  Our newspaper said that the first 17 days of September this year were hotter than the first 17 days of July!!  I can't complain though.  I do love fall weather but it always seems so short-lived before winter sets in and I love having more warm weather than cold.  Anyway!!  We got lucky because the pumpkin village opened yesterday!  This has always been the girls favorite time of year and they were so excited to see all the pumpkins again.  William loved it as well although it would have been nice if he'd been walking!  Sadly, we're still working on that.  I blame it partially on the fact that he is really really fast on his knees and also thinks it's funny to fall over when we're trying to walk.

 Abby looks at me says "mommy I'm Abby pumpkin cheeks!!"  Had to take a picture of that!

William's first time wearing shoes!  I just never put them on my kids until they're walking -- I guess I don't really see a point.  But since he will stand and try to walk I wanted something on his feet.  When we took them off at home he threw a fit and we had to put them back on.  The pants are also to protect his legs while he crawls around in the mulch but I think the whole effect is that he looks like such a little boy!!  No more baby here!

 Lots of favorites to enjoy -- the bridge, the Cinderella pumpkin carriage and the millions of tiny pumpkins that the girls spent a lot of time rearranging so that they could be with their mommies.  

 Chopper upgraded the operating system on his phone (he loves the smart phone more than I do I think) and spent a lot of time doing pictures.  There are some that he took at the end.

 Ok I don't know who these people are so I hope I don't get in trouble but one of the things the girls love about the Arboretum is all the brides and teenage girls having their Quincenara photo shoots.  We see LOTS of poofy and bright dresses.  

Abby, King of the Rock -- Mulan reference if you're not familiar with Disney.  She was also King of the Pumpkin at one point.

These last 4 are pictures Chopper took on his phone.  Kind've sickening when your phone is as good or better than your actual camera!!

But yes, we're still obsessed!

Great News!!

Our free fetal DNA tests came back early!!!  And I have to just briefly say, this test amazes me.  They take my blood (so totally noninvasive), separate out fetal blood cells, and actually count the chromosomes on numbers 13, 18, and 21.  So when the results come in, it's not a statistical chance of having a child with a chromosomal abnormality, it's a yes or no.

And the answer is no!!

I'm so relieved!  Chopper and I will love any child that comes to us but it is a weight off my shoulders to know that we are only dealing with one problem right now.  I am really grateful for these amazing technologies that are allowing us to know so much so early on and prepare in the best way we can to do everything we can for our baby!

I feel rejuvenated and upbeat again about going to see the cardiologist next week because it will just mean more answers and more planning and prep work that we can accomplish.  I still have half a pregnancy to go (and then some) so I've got paint and quilts and things to think about!!  Yay!!

Clotheshorse (x3)

Abby just came up to me crying "I didn't have a good day!!"  And when I asked her why, Megan replied, "because she went to get ice cream that way" and pointed at her clothes.  She's wearing a tiger costume complete with tail.  Chopper said she was a hit at the store with all the women and I can't blame them, she is super cute.

But all of my children are clothing obsessed.

Megan loves shoes.  Particularly adult women's shoes that I don't wear.  We are very rarely at the mall but went today for a birthday party and did some shoe shopping after.  I was looking for a comfortable pair of flats to go with all of my incredibly comfortable maxi dresses and she kept pulling out high stiletto heels and anything with glitter or spikes or jewels on them.  I tried them on, but didn't buy them.  I think it's disappointing to her.  But both girls are very good about complimenting me on my wardrobe when they like what I'm wearing.  Which is mostly when I'm dressed up for church!!

Abby started gymnastics last Monday but has been wearing her leotard and rainbow leopard print shorts pretty much every day.  Except today with the tiger outfit.  We still have oodles and oodles of dress up dresses for all the princesses but lately it's all about the animal print.

She also is slowly taking over all of everyone else's clothes!  These are some of my maternity pants of course and she tried to wear William's onesie the other day and was pretty upset when I made her take it off. 

Despite being a boy, William is also obsessed.  Although in a slightly different way.  He never took a pacifier or sucked his thumb but loves to put fabric against his mouth and do this funny thing with his lips and tongue.  He's not really sucking on it or chewing on it -- I can't explain it.  He particularly likes knits and so I frequently find him on the floor like this:

Now that I'm leaving the kids a lot more with friends to be babysat (so many doctor's appointments!), I'm leaving a little knit blanket with him as well and so far the report is that once he realizes I'm gone, it helps a great deal.

This is just a beautiful sunrise from the other morning.  I am glad that as much as they love clothes, Megan does not agonize over what to wear to school.  She knows what she likes and gets dressed pretty quickly.  Of course that means a silver sequin skirt paired with a pumpkin shirt or several shades of blue and socks pulled up to her knees but hey, she's an artist right? 

News We Can Use

I have been so excited about today's appointment with the maternal and fetal specialist.  I've been praying that what we would get today would be clarity and we certainly have gotten that -- just not entirely what we were expecting.

I've learned that the technicians who perform sonograms are very chatty unless they encounter a problem and then they get pretty quiet.  After all, they're focusing on seeing everything they can with the problem and don't really want to say anything anyway -- they want the doctor to do the telling.

The baby boy (definitely, DEFINITELY another boy) looks good overall.  He's proportional, working kidneys, stomach, bladder.  Good head and brain "stuff" including a good nasal bone and no indications of cleft palatte or club foot or other markers that indicate a chromosomal abnormality -- particularly the nasty ones 13 and 18.

Except. 

He has a pretty significant heart defect.  And I say significant because it's not something that we can hope will correct itself and the best case scenario is surgery once he's born.  Worst case scenario is, well, fairly obvious.  The technical information is a little above me right now -- it's hard to absorb that stuff when you're trying to absorb the bald facts BUT I do know that all the chambers of the heart are there.  Some of them, particularly with the outflow of the blood, are not working right and there may be a hole somewhere because it appears that there's some bleed through so to speak.  We are having a free fetal DNA test done (non-invasive blood test) to determine if this is related to Down's Syndrome or if it's an independent heart problem but those results won't be back for about 2 weeks.  We're also going to see a pediatric cardiologist in about 2 weeks and have enough information to know that I will be delivering this baby at a hospital where they can whisk him away immediately if need be.

Ironically (because it took us 9 months to name William!) we have a name picked out for him and are willing to share now that it's quite positive he's a boy!  He'll be Aaron Andrew (the Andrew part after my dad) Whittacre and I can't wait to have him for however long we get to keep him whether he's easily fixed or not.  Needless to say he probably won't be our sports star so I guess we better start training William now to be the left-handed prodigy!  The girls already have too much of my innate "talent" to be athletic unfortunately.  We'll just all have to be known for our brains!

Good news is that my pregnancy and health shouldn't be impacted at all which is good because Blue Bell ice cream goes on super sale Saturday and it would have been a shame to miss out on that!  :)

In the meantime, we wait some more and keep praying.  I keep gradually feeling better and better and am starting to feel some movements!  Yay!  In fact, as much as he moved around for the ultrasound today we'll just keep our fingers crossed that he's 10 times worse when he's 2!!  Kind've makes me appreciate the ruffians I've got!

Best Things

I didn't feel like I had much to post all week because we're certainly not "doing" much.  But then I looked back and realized that having a low-key (i.e. lazy) week has really made me appreciate little things that just make me smile on a day to day basis.

So the best things about this week:

• Watching Megan walk out of the school with her group to the point where we meet to walk home together.  She's so small and sweet among the older kids and with her backpack bouncing against her legs.
• Every day after school when she sees me she gets excited and yells, "mommy" and gives everyone hugs and kisses.  I don't think that will last too many more years and I love it.
• Abby saying several times this week: "oooh in-tris-tring".  It's adorable.
• William NOT walking because he gets so excited to do it he can't stand up.
• Getting to know new people in our ward by having them over for dinner and Chopper smoking up awesome ribs and brisket.
• Rain in Texas!!!  And letting the girls play in it and get delightfully soaked.

• Morning walks to school that are NOT 100% (but afternoon walks that are).
• An amazing sister-in-law (Denise) who sent a package just because she loves us and made me cry and put on 5 pounds because of the awesome Cadbury chocolate and dark chocolate pomegranate seeds that I have not shared with a single person.  The package made me cry, the chocolate caused the weight gain.  
• The number of people who have asked if I'm ok and also made me cry.  Because I am.  Just emotional.
• Finally FINALLY finishing a quilt to order and realizing that I don't think I want to quilt for a business -- just for fun.  But I'll run a fabric store instead.

  

• My amazing husband doing all the work because I may not be throwing up but I'm still tired, and my foot hurts, and I have a headache, and what else is wrong with me?  Yeah, I may be worthless right now but Chopper is incredible.
• Oh I should include girls night to see Austenland last Friday that was absolutely hilarious and has spurred a Jane Austen marathon for the week.  And the realization AGAIN of how much I do not like Keira Knightly's Pride and Prejudice.
• A trip to the temple FINALLY last night.  It's been way too long.
• Cooking chicken and not getting sick.
• William screaming for 15 minutes only to quiet down when Chopper gives him to me.  Ok slightly annoying that he only calms down for me (literally) but kind've sweet when he snuggles in and starts doing his funny lip thing on my shirt.  Yes he still does that.
• Keeping up with my family on Instagram -- soooo worth the phone!!!
• Megan asking me to make tiger ears with her hair and then taking a self picture that's pretty funny.

• The girls cleaning their room without being asked (even though they were supposed to be sleeping) and doing a great job until you look at the other side

and see this:

 all piled up.  But they were so excited and shouted "ta-da" and everything!  How can you not love that?