Kathryn Morgan Goodson Arrives

Kathryn Morgan Goodson was born on Feb 17th at 4:51 pm. She weighed in at 6lbs 2oz. She is a beautiful little girl. Mom is feeling pretty good and recovering nicely.

Kat has two heart defects. One is tricuspid atresia which we have known since we started our blog. The other is truncus arteriosis type 2. The doctors have seen each one separately, but not both in the same child. There are only 14 documented cases of this in the world. Kathryn is the 15th case. The cardiac team and the surgeons are going to meet in the next few days. They will decide when they are going do surgery. They are optimistic and she is now breathing on her own. She is stable now. We got to hold her and rock her for quite a while.

Cate, Kat's big sister, has been passed around the neighborhood. She has been having a blast with everybody. She gave big hugs and kisses to her baby sisters pictures. Cate will be a great big sister! We would like to thank all of our friends who have helped us take care of her. We are truly amazed by the out pouring of support.

We will try to update the blog as much as possible, each step along the way. Thank you again to everybody for their thoughts and prayers. We definitely need them!

10 Days and Counting.....

With the countdown still a-go, we had another good round of appts today. Her Nonstress Test looked very good yet again, and she's definitely a baby-on-the-move which is also very very good. Dr. Byrne is letting us skip Tuesday's NST, since she's really not worried as much anymore about the arrhythmia. We're still dilated at 2cm, but we're now 50% effaced, so our induction on the 21st may not require as much "help" to get things going labor-wise. And there's no indications that we'll be going earlier at this time.

She had one of the Neonatologists come in to explain a bit more of what we can expect once the baby arrives. First, we should get to hear a screaming baby once that first breath happens -- believe it or not, I was worried about that. Then, they'll pass her through the "window" and they'll get 2 central lines going through her umbilical cord, since that's where they can get the biggest lines in. However, it doesn't always work, so she may have to have a line her arm. Through those lines, they'll give her glucose (in place of breastmilk) and the prostaglandins (the hormone that will keep a fetal heart duct--the Patent Ductus, from closing). Since prostaglandins can hinder lung function, she may need to be intubated and on a ventilator, but she may do fine on her own -- it's 50/50. As well, they'll give her an echocardiogram at that time and hopefully, they won't find any further complications. That will be her first hour and fortunately, we'll be right next door in the delivery room while all this is going on.



And if she requires oxygen, they won't give her 100% of what a normal baby needs; rather, they'll keep her at or below 80%. Normal oxygen levels tell the Patent Ductus that it's OK to close (as it would with a normal baby--usually within 10-12hrs of life). But since the duct is what will be helping to circulate/oxygenate her blood until she receives the heart shunt, they keep her oxygen limited, and give her the prostaglandin hormone to keep the duct open.

So, after that initial hour or so, they'll get her over to Primary Children's and into the Cardiac Unit of the PICU -- if there isn't a bed available, they'll keep her at University Hospital (with me) in the NICU until a bed opens. Once they have her at Primary's, she'll be assessed by the Cardiac Team, and we'll find out who her surgeon will be. They anticipate her surgery will be 5-7 days from her delivery, but if they find any serious complications, they may do it sooner.

She won't be allowed breastmilk until after her surgery; since she'll be on glucose and other things in place of milk, she won't drop the usual few pounds that other newborns do. And, she'll be pumped full of fluids during surgery, so they said we can expect her to look quite bloated for a few days after. Once surgery is over and she's stabilized, they'll be able to see how well her digestive system is doing and if she's ready to tolerate breastmilk. And of course, there will be a number of things they'll be on the lookout for once her surgery is complete - like the chest swelling we saw with little baby Ammon during our PICU tour.

So, that's the "clinical" update. Personally, we're trying to imagine and prepare for what the upcoming weeks will bring. Dr. Byrne started me on Zoloft about a week or so ago; it's takes 2-3 wks to work into your system and I have to say ....it's draining me! Of course, getting up around 5-7 times to pee every night doesn't help; I tend to spend at least one of those pee breaks lying in bed worrying for about an hour or so. Funny enough, Cate's late night visits to mommy's bed have been welcomed (we're trying to get her transitioned to the big girl bed, but she ends up in my bed by about 2am). Somehow, cuddling with her in those "wee" hours has been therapeutic (HA, get it ..."wee" hours?! Geez I crack myself up). And good thing Daddy is sleeping downstairs on the couch ...with all the late night activity, he'd never get any sleep! Speaking of Daddy, he recently learned that I am not the only gaining baby weight, so he's started back to the gym. I think it's quite unfair but in less than 2 wks, he's already dropped 4lbs (that will take me a month most likely). I'm so glad he's doing that; he's worried about me, the baby, how Cate will do through this, let alone the worries of work. He's good at coping, but this is an awful lot to tackle. I'm glad the gym is proving to be a good outlet for him.

I guess that's it for this update! Please keep the prayers coming; we appreciate any and all we can get!

Another week of tests DONE!

Well, I couldn't be more proud of my little bundle -- Dr. Byrne told us this week's Nonstress Tests were the best she's seen from us thus far! And, we've dilated to 2cm ...though baby hasn't engaged yet. SO, she's keeping our 21st Induction Date until baby says otherwise. But, she's looking good, head's still down, and she's definitely a kicker. I can't wait to meet this kid!

Now Bob and I are just trying to grasp the fact that we have 2 weeks left to go! Bless his heart, he's been helping so much -- cleaning carpets, scrubbing the floors, foot rubs, the full gamut. He's the bomb! Even though I'm jealous, I'm hoping he will take the time for himself and go snowboarding Sunday morning (before the football game, of course). I worry about his stress level through all this, I mean, an evening cocktail after work only does so much. Thankfully, he started back with the gym this week; he and Cate have been hitting hard (she LOVES their daycare/play gym). I hope he'll be able to keep it up while the baby's in the hospital.

On the baby front, we got the names of the two possible surgeons who will be taking care of our baby: Dr. Burch and Dr. Kaza. The awesome moms with our Support Blog recommended both quite highly, so I feel a lot more at ease regardless which one we get. But, I have to say ...I am a little more hopeful to get Dr. Burch, since he trained in Louisville! :) If any of you want to read up on them, their bios are at: http://www.pedcardiology.utah.edu/team/index.html --go to the Surgeons link. You can also read about our Cardiologist, Dr. Menon, on that link.

Kevin, our buddy who's a Safety Officer at Primary's, is going to give us the full "insiders" tour next week. It will be nice to kinda know our way around the hospital. It kinda seems like it's gonna be our 2nd home for a while.

Well, that's the update for this week! Hope everyone is set and ready for a great Super Bowl weekend ...have an iced cold beer for me!!!

We have a D-Day: 2/21/2010

Dr. Byrne gave us an Induction Date today!! Granted, she could always decide to make her appearance earlier, but I hope she doesn't. As it stands, the timing would actually be helpful for her mommy and daddy, since my mom comes to town on the 22nd. That way, mom would be here during her 1st surgery.

But anywho, we had a couple pretty good appts today. The Dr's appt went fine -- we're dilated at a 1, but the baby hasn't dropped yet. Everything else seems to fine, even my seemingly terrible swelling is fine, because my blood pressure is spot on normal. However, our Nonstress Test is still showing some signs of Arrhythmia, but nothing they want to treat. So, all in all, a good appt!

Now, to start getting this house ready for a new baby! Poor daddy gets yet another big project this weekend (right when he thought he was done ...kitchen project completed): time to clean the carpets. I even took the big step in getting sleepers and onesies washed. I was so hesitant to do so, but the heart moms tell us we need to prepare for the baby as if everything is normal. It's kinda strange ...it's as though you don't want to jinx anything by preparing for your baby to come home ....like that could somehow effect the outcome. But I must say, I forgot how much I love the smell of Dreft baby detergent! And since Cate is refusing to give up her crib yet, and the girls will eventually share a room ...the baby's room is pretty well ready to go anyway. I have to wonder if I'll ever reach a point where I'm OK with the baby being out of our room (but don't tell her daddy that)!

More Education on Fetal Hearts

So, our Nonstress Test this morning wasn't so bad (and now I wish I would've slept last night!). Baby's baseline was between 110 and 115, and her accelerations were up to 140 and for the right amount of time. Lois said today our baby looks to be fine.

However, Lois still heard signs of arrhythmia, but gave a better explanation than what we got last time. Firstly, healthy babies can have arrhythmias in utero, as well as skipped heart beats. It's only when they take their first breath ...lungs working with the heart, can anyone be sure of any sort of real problem. Because our baby already has a heart problem, the acceleration she heard last week was a little alarming because of it's spike and duration (though our Cardiologist wasn't too concerned).

On a side note, we learned a bit more about what these Nonstress Tests are checking, and it's not just heart rates. As Lois explained, the test is looking at the overall systolic nervous function, which gives indications whether the baby could be sick. When you are sick, you lie in bed and your heart rate doesn't fluctuate, same with babies in utero. In the test, they want to see movements -- both baby and any contractions that may be happening. The movements create heart rate fluctuations -- the better the movement, the higher the heart acceleration. Luckily for us, our girl seems to always be on the move.

And yes, I was thanking God above on the entire drive home for the good test we had today. What a relief!!! Granted, I've got my guard up for Friday's test, but today was the news I needed to hear. I'm also getting a bit more nervous these days ...we're now officially one month out from D-Day! Bob and I were saying over the weekend ....it's a crazy mix of emotion thinking about her arrival; we're so excited and so scared at the same time. Strangely, it helps knowing he's as scared as I am (luckily, he maintains his composure much better than me). I can't put to words how thankful I am to have this man in my life. He's such a wonderful husband and dad, and he's kept my sanity through all this. I'm so glad he'll be with her when they take her over to Primary Children's. That's been such a sad thought for me-- my baby being an hour old, and taken somewhere else without me. Knowing her daddy will be her for those first hours gives me so much solace, even though I want so much to be with both of them. I'm still trying to deal with the fact that I won't get to hold her when she's born ...that's the thing I'm probably in the most denial over. Ahhhh! I gotta stop there - we had a good appt today, so I need to leave it at that. Thinking any more about next month may spoil the good news of today.

And now, a possible Heart Arrhythmia

I swear, this kid just won't give her mommy a break. This week's Nonstress Test uncovered a possible Heart Arrhythmia -- her heart acceleration was good, but was sustained longer than what they want to see, and she also skipped a few beats during the test. Our OB is concerned; she's having us start bi-weekly Nonstress Tests as of Monday, and mentioned the possibility of treating this in utero if it persists (she'd put me on heart medication to help regulate the baby's heart rhythm). She also mentioned that this will be another item on the "to-do" list when the baby arrives -- getting her heart into good rhythm, probably through medications.

Even though Dr. Byrne had consulted with a Cardiologist to make sure this all isn't due to the baby's heart condition, she wasn't able to speak with our Cardiologist directly, Dr. Menon. So, once I got home and dried the tears, we sent him an email to make sure he's kept in the loop ...and literally within 2 minutes of hitting "send," he called us. Though the arrhythmia isn't really due to her heart defect, he told us that the range of the arrhythmia isn't a wide enough "swing" to warrant treatment --our baby's baseline heart rate is 115, her accelerations were around 122 and 140 and sustained just a bit longer than they should be ....if it were more like a baseline of 100 with acceleration to 180, then he'd be concerned, and we'd be looking at medications. As well, her heart skipping beats is somewhat par for the course with Tricuspid Atresia. Making sure she has good heart rhythm once she's here is already among the "to-dos" upon her birth, and medications to help it regulate are also a possibility. Basically, he told us that OBs tend to be a bit overly cautious when it comes to babies with heart conditions; Dr. Byrne is right to be concerned and keep a close eye on this, but it's nothing to lose sleep over either.

So, once again, Shaji Menon is our hero, and I can't thank him enough! And we're just praying that all goes well come Monday.

Guess we're OK?!

We went back in yesterday for another Nonstress Test and they're not sure why she had such a dramatic deceleration. Her baseline heartrate is still at the low end of normal (115), but even the cardiologist wasn't concerned. As well, they measured our amniotic fluid and said that we're perfect. I asked the Tech who did that test if she wouldn't mind accompanying to the remainder of my appts -- she's about the only one to give me good news in a while.

So, I'm not sure if our OB has looked at the results, I don't know if we should expect a phone call, wait until our next appt to hear more, I just don't know. Thank God for Adrienne who said, "If they were that concerned, they would not have let you leave the hospital." I was able to breathe much easier after she said that.

Now that we're down to a less than 6wk countdown, I'm relishing every kick and every hiccup ...which she seems to be getting more often these days. I keep getting these flash images of her in the ICU, or hooked up to the heart/lung machine in surgery, and the panic sets in again. At times, it's easy to divert that train of thought, but not all the time. I'm also having a hard time imagining her birth, and not being able to hold her. I swear, I didn't want to let Cate go when I had her, I just can't fathom only getting a glimpse of this baby girl. I keep hoping that I'll see a nice chunky baby when she arrives (like her sister); at least that's one thing that would work in her favor. It goes without saying that I'm so glad I'll have Bob with me that 1st hour while they get her stabilized. But I'll also be glad to see him go with her over to Primary's; I don't want to think of her being setup in the PICU without one of us there with her. I hope I won't have to wait long before I can go over there and see her. I swear, they're gonna have to drag me away once I do!

I'm ready for the RollerCoaster to end!!

Just when I let my guard down, in anticipation of an "easy" appointment, this baby has another idea in mind. We had our 2nd NonStress Test today and wouldn't ya know, she had a major heart deceleration. It happened right as Lois was trying to get her baseline heart rate on the monitor ...so could it have been a glitch? Seems logical to me, but I guess not to them. And rather than nipping this in the bud today, I get to wait yet another day ...with nothing to do but worry ...for another Nonstress Test tomorrow. They're also going to measure the amniotic fluid via ultrasound. Again, WHY COULDN'T THEY DO THAT TODAY?!

I love how they tell ya, "oh, try not to worry." What the hell else am I left to do? And given our good ultrasound of last week, how on earth could we have lost that much amniotic fluid in a week ...couldn't they at least explain that to me before I left? Honestly, I know we're in good hands, but it's times like this that I really hate Dr's and Specialists and how freakin' secretive they can be. When you leave a patient to speculate like this, all you do in compound their stress.

Well, I guess that's all I have to say about it at the moment. I pray this next day comes soon; I'm reaching all new levels of anxiety....

Another Fetal Echo ...another hole!

Ok, well, maybe he did tell us about the other hole before, but Bob and I don't seem to remember, most likely because we were in such shock finding out about her overall condition. The baby not only has Ventricle Septal Defect (VSD-a hole between her ventricles), she also has Atrial Septal Defect (ASD) -- a hole between her atria. But, as Dr. Menon explained, she actually needs the ASD--it's the only way her blue, oxygen poor blood can mix with the oxygen rich blood.

In fact, the cardiac surgeon will assess her ASD and VSD, and possibly enlarge the holes during her surgery. It's all apart of the "re-piping" to turn her dual ventricle heart into a single ventricle heart.

As I was lying there, I was seriously regretting our decision for Bob to skip this appointment (he had a big meeting that would have been tough to get out of) -- I could tell the Tech was having a hard time getting the right images, and I wasn't sure why. I swear, it's just impossible to relax at any of these appointments; I still keep waiting for the other shoe to drop! But I later learned why she was having so much trouble -- not only is our girl on the move and not staying still long enough to get a good image, her bones are calcifying, making it even tougher to get good, clear images of her heart. That's one thing I really like about our Cardiologist, Dr. Menon, he put me right at ease as soon as he came in to do a few scans of his own. Rather than toiling and remaining quiet like the Tech did for 35 min (as I laid there, praying feverishly), he was immediately telling me why the images weren't coming as easily. I'm so glad we'll be able to keep him as our Cardiologist after she's here.

Let the Doctor Appointments Begin!

So, we had our first Nonstress Test yesterday, along with another Ultrasound and Clinic appointment. The Nonstress Test kinda scared the hell out of me -- it took Lois a while to pick up her heartbeat and once she did, our girl's baseline heartrate was at 115, a good drop from her last Echocardiogram where she was at 130. Luckily, 115 is within the normal limits, and babys' heartrates tend to lower the more they grow. Otherwise, the point of the test was to measure spikes or accelerations in her heartrate, her movements, and any contractions I might be having. Per Dr. Byrne: She looks fantastic! And, I learned the tightness I've been feeling in my lower abdomen hasn't been her shifting around at all ...they've actually been contractions (the normal kind)! What a relief to hear all looks good this week.

Her ultrasound also looked great -- she's up to 4lbs 11oz, and her growth is right on track. I asked again about the fluid on the brain, and got the same answer as before -- all within normal limits, nothing to worry about, and if there was a problem with it, she'd have a noticeable malformation on her brain that absolutely would have been picked up on ultrasound by now. I'm still mad our old OB even mentioned that stupid fluid measurement.

Our regular clinic appointment also went well -- we're measuring where we should be, gained a few more pounds over the past 3 1/2wks (thank you, holidays!), and all symptoms are normal. She asked how I'm coping mentally, and I had to admit that the emotions are much closer to the surface lately. She told me there just no way for a parent to prepare for this -- and you can't turn off the worry and anxiety. I was a little surprised, but also quite relieved, that she's going to prescribe a low-dose Zoloft when we reach 36wks. She said it won't "dull the pain" by any means, but it will help even out the tremendous lows that a lot of moms go through with a critically ill baby. She also wants to keep a close eye on postpartum depression, as high stress is a big trigger. I'm so relieved she "gets" all this -- at times I feel like I'm going out of my mind with worry, and I know it only gets worse from here. It's nice to know I won't have to just "deal" with it all on my own.

Guess it's high time we get used to all these appts ...cause we're on the weekly schedule from here on out. Next week, we'll have our last Fetal Echocardiogram on Tuesday, then we have our weekly Nonstress and clinic appts on Thursdays. It's starting to feel like we're nearing the finish line now!

A New Year

Ok, so I didn't handle the New Year holiday the best. In fact, I cried through most of New Year's Eve. Why did I have to read that damn article? A little girl, Elaine, passed away the day before her 3rd birthday with a similar heart defect to our baby's. And yes, Bob pointed out that that poor little thing had a number of complications we just don't know our baby will or will not have. But still, I couldn't stop thinking of her, and I couldn't stop thinking of her mom who was holding her hand as she passed.

Now that it's been a couple days and we've embarked on another house project, it's helped to keep my mind off of the bad part of what might happen. We're working on our kitchen at the moment; paint and tile for the back splash, thanks to a couple of Grammas at Christmas time! Chances are, this is our last opportunity to get a decent house project finished for a while.

As Bob makes another Home Depot run, I took the opportunity to sit on the couch for a quiet moment (Cate's napping in the basement to "Horton hears a Who") ...and my thoughts wondered back to little Elaine, and then to what a tough year 2009 has been for many of our family and friends. My StepDad lost his mom, Anne lost her mom, Marie lost her mom, Adrienne lost her Cillian, Kevin lost his dad, Nathan lost his dad and his mom (within hours of each other, and each from different causes), we lost a baby in the Spring and by Fall, we find out our next baby has serious problems. Screw the state of the economy, I'll remember 2009 as a year of loss ...real loss. But, while I ponder all this, I keep thinking to myself, 2010 has got to be different. We've paid our dues, so to speak. Maybe this really is our year to shine. Maybe, just maybe, our little girl will be born strong and tough and ready to kick ass all over this heart problem.

I wish I could keep thoughts like this rolling, without the bad popping into my head. Thankfully, I read another story of a heart baby today ...this time, a success story of a little boy, Ewan, who has exactly what our baby has. To hear that he's celebrating his 6th birthday ...that he's active, participating in all sorts of sports ...even soccer and skiing, that's the kind of thing gives me renewed hope. I hope we'll be reporting the same kind of story 6 yrs down the road.