Tuesday, December 29, 2009

Some of the Things We Can Expect

Granted, we'll be adding a lot more to the list as we get closer, but this is what we've learned thus far.

When she's released from the hospital:
  • She'll require oxygen.
  • She may have a feeding tube. Babies who aren't fed via mouth for the 1st weeks of life lose their ability to suck. When she is out of the PICU and on the surgical recovery floor, I'm allowed to start spending to the night with her. At that point, the nurses will teach me how to teach her to feed. If she has trouble by the time she's ready to go home, they'll keep the feeding tube in.
  • We can't take her to public places, and visitors to the house will need to be kept to small numbers. Anyone with a cold, cough, or flu can't see her.
  • We will have to be crazy diligent with the hand washing -- Cate included (and is that gonna be a challenge!).
  • She'll require a number of medications.
  • She'll be slow in making the typical baby milestones, like rolling over, sitting up, eating solids, etc. They tell us it's because her heart won't be at "full function" ...so her development won't be at full function either.
  • She'll continue to have the bluish tone, even after her 1st surgery. Once she has the 2nd OHS between 4-6 months, the blue tone should go away and we'll finally have a nice, pink baby (until she's in need of her final OHS).
The long-term stuff:
  • Any cold or respiratory infection could easily turn serious. Heart kids have many trips to the ER, and/or hospital stays when they get sick.
  • She'll tire easier than other kids.
  • As her heart grows, and she outgrows the shunt, she'll start turning blue again. That's our biggest sign that she's need the next surgery.
  • We'll have to monitor her oxygen saturation for a long time to come, even after her surgeries are done.
  • Keeping weight on her will be a challenge. Heart babies tend to have a very difficult time maintaining weight (if only I could take that problem from her!).
  • She won't be allowed to play a number of competitive sports, but not all of them will be ruled out.
  • Trips to high elevations may be difficult for her; she may need additional oxygen.
  • She'll have to see a Cardiologist for the rest of her life.
  • The Fontan procedure will hopefully be her last OHS, but that's not definite. A few kids in our Support Group have needed other procedures later in life, like pacemakers.
  • Any major complications, or if problems develop with the left side of her heart, she may become a transplant candidate. Thank God, the Cardiologist told us that the odds of that happening are slim.

How Cate is Doing

What a miracle worker she has been thus far. She can pick mommy's spirits up with one little sly smile. I just wish I could make her better understand what's about to happen -- why mommy cries so much lately, why mommy and daddy will be away from the house more than we ever have, that although we love her just as much, her sister is going to need a lot of attention. There's just a lot for her to understand that I wish I could explain to her.

I feel terrible -- I know I've been crying in front of her too much. She's started mimicking mommy: she'll come up to me with her face in hands pretending to sob. Thankfully, one little tickle and she's giggling like crazy. She caught me crying a couple days ago and when I looked up at her, she had taken all of her clothes off (diaper included), and was wearing daddy's tshirt from the laundry pile. Needless to say, she also knows how to snap mommy out of it too!

As well, there's plenty I wish I could get done with her before her sister's arrival ...especially the potty training. We're trying a couple new things that other parents have suggested, but the consensus seems to be: she'll tell us when she's ready. I'm also hoping we can get her in her big girl bed before her sister's arrival too. But I'm really hesitant to force changes on her, especially given the events of the next weeks.

One thing we're fairly certain of, she's really going to enjoy some time at daycare. We're still looking into affordable alternatives, but PCMC told us of the Jewish Community Center that offers discounted daycare for families with children hospitalized at PCMC. I'm hoping we can find out more about it during our next Echo appt. Bob's taken her to the gym's daycare a couple nights so far, and she absolutely loves it (her 1st time last week, she threw an unholy fit when it was time to go home!).

Thankfully, mom is coming to help out for a week in Feb, even though we're not certain of the timing of everything. At least she'll have her gramma here to spoil her for a while. And, our awesome neighbors have offered to help lend a hand with her too, and we are absolutely appreciative. She's so comfortable with everyone in the neighborhood; they're like 2nd family to her (and us, of course). I don't know what we'd do without them.

Man I just hope we "do right" by her with all that's going to happen with the baby. Our Cardiologist had told us that holding vigil while the baby is in ICU is unnecessary, that Bob and I need to take that time to be with Cate, get plenty of rest, recover from the delivery, and basically, get our stress under control. I don't know why, but I was a little surprised with that advice. I mean, she will be under the best care possible -- she'll have her own nurses assigned to her 24-7, but I guess I just can't fathom not being there with her. Anyway, I know that's certainly good advice where Cate's concerned, she's going to need as much of mommy and daddy as she can get while all this is happening.

And every time I look at her, I'm reminded how lucky we are.

Monday, December 28, 2009

Prepping Mommy and Daddy for What's Ahead

Talk about working with the experts. Since our regular OB doesn't handle high risk patients, nor can he deliver at the University of Utah Med Center (which connects right to Primary Children's Med Ctr next door), we made the switch to Dr. Byrne last month. She's fantastic--she handles only high risk pregnancies, with her specialty in fetal heart anomalies, so we're in with the right doctor. At our first appt, we didn't expect to be there so long ...4 hours (thank you Auntie Adrienne for babysitting that day)! I thought I was gonna pass out from starvation, but at least she's thorough.

She talked us through what the birth will be like given our situation. Firstly, they'll induce labor early (about 1 to 2 weeks, depending on the usual pending-labor signs), so as to have the cardiac team ready upon the baby's arrival. We'll deliver in 1 of 3 special rooms, which has a connection "window" to the NICU evaluation room. That's where the baby will spend her first hour -- they'll give her an immediate echocardiogram, get her prostaglandins started (a hormone that will force a fetal heart artery to remain open), and they'll see if she needs breathing support. Dr. Byrne explained that, though she won't be oxygen starved, she'll receive limited O2 - they'll give her about 80% or just enough, so that they can mimic in utero conditions as much as possible (it was at that point, that she told us the baby will look blue ...but not a "scary" blue).

She told us to be prepared - upon her arrival, we'll only get to see her for a couple minutes before she's passed through that window. Once they have her stabilized, Bob will go with her through the tunnel to PCMC, where they'll get her setup in the Cardiac Unit of the PICU (Pediatric ICU). At that point, we visit her as much as possible and hope she stays stable. That will determine when they do the 1st open heart surgery.

At our last cardiology appt, Kim gave us a tour of the PICU/Cardiac Unit. We were introduced to Ammon, a week old baby boy who was 2 days out of his OHS. It was hard to see such a beautiful sweet baby, with so many tubes and lines coming out of him. The RN assigned to him was great -- she walked us through what every monitor was doing, every computer screen, every tube, what we can expect prior to her surgery and after. She told us that the nursing staff usually break the rules when it comes to siblings visiting the PICU -- so we'll probably be allowed to have Cate meet her sister before her surgery (they usually don't allow kids under 14). I have to say, between the Cardiology Staff at PCMC and our new OB and her team at the U of U Med Ctr, we feel like we're with the A-Team.

In addition to the tours, Kim got us in touch with Intermountain Healing Hearts - a support group for parents of "heart" children. They have been amazing -- giving us support, understanding, advice, etc.; I just don't know what we'd do without them. To have people who understand exactly what you're going through, who understand your fears, anger, periodic nightmares, it's just been such an amazing resource for us. In fact, it was one of the heart moms who suggested we start this blog. As she said, it's fantastic therapy for us (you gotta get all this out somehow), a great archive for both of our girls, and a good way to keep everyone else updated as we go through this journey.

One thing I really didn't expect to learn from the group is that this really is a lifetime ordeal for our baby. It won't end once her surgeries are finally over. I guess I didn't want admit it to myself just yet -- I feel like we can't forge ahead with anything until this 1st surgery is over -- but even if (...and God willing) when we get through the last OHS, we'll never be done with the worry. I keep thinking of Noah (also born with Tricuspid Atresia); he's survived it all thus far, but now he may need a pacemaker at the age of 10 ...like his mom told me, "When you think it's finally over ...something else comes along." It's just so hard for us to fathom.

But hell, I can't really fathom my newborn not coming home with me. I feel her moving around right now and I wonder why she has to be put through all this. It's like a sudden wave of panic washes over me when I think about what's to happen in the next 6 to 8wks. I wish I could do something to make it all better, but instead, all I can do is cry. And I know, we're lucky it was diagnosed early, we're lucky to have PCMC so close, we're lucky medical science has advanced this far, we're lucky to have good insurance, I know I know I know, but dammit, why couldn't we be as lucky as we were with Cate? Why can't her odds of survival be 90 or 100%? Why can't I stay focused on the positive? When will I stop lying in bed at 3am worrying and dreading all of this? Better yet, will I ever sleep through the night again? When will I know my baby really is OK?

Sorry, but I guess I need to get this off my chest. I go through this a few times a week now; getting it down in writing might just help. I'm done ranting for the moment.

12/16/2009: The 2nd Echocardiogram

Though not as scary as the 1st, we were still nervous going into the Cardiologist. But, the appt went as well as we could hope. Her heart is growing with her, her left side is functioning normally, and (according to her 1st Echo) the aorta looked to be coming from the right ventricle--a condition known as Transposition of the Great Arteries, but he verified that it is coming from the left, so he could rule out that particular complication. The best part of it all was seeing her so active -- they had to stop a number of times during the scan to see if she'd settle down long enough to get a good image! She had Dr. Menon laughing at one point with all of her flipping around. He said that's one of the best signs of all: an active baby equals a strong baby.

Again he reminded us that nothing is for sure until she's here, but at least there were no new surprises this time around. The real test for her will be when her lungs start working and interacting with her heart; there are 4 veins/arteries they are concerned with, but until those lungs are filled with air, they just can't tell.

He told us that her 3rd OHS may be a little different than what he had first explained to us. They have been working on a new method in which to reconnect the superior vena cava to the inferior vena cava (the arteries that carry blood back and forth from the upper [superior] and lower [inferior] parts of the body) using a synthetic material rather than an actual vein. The synthetic is proving to be much more elastic and durable in the long term. But given it's a few years out, I really didn't focus on that ...especially since we were getting our first round of real preparation for all this.

11/4/2009: Our 1st Echocardiogram

The Hoffmans sent us off with a supportive kiss and hug as they took Cate that morning. Bob and I had no idea what we were in for, all we knew was that the baby had a major heart problem and we were heading downtown to Primary Childrens Medical Center (PCMC) for something much more serious than the stitches had received Cate the year prior.

To my surprise, the Echocardiogram was just like a regular ultrasound, but obviously focused on the baby's heart. The Tech must have taken about 70 images before calling the Cardiologist, Dr. Menon, who took more of his own images. When they were finished, they led us to a consultation room. The 5 min. wait seemed to be 5 hrs, and my eyes kept wandering over to the shelf of handouts -- there were about 20, 1 of which caught my eye: the Bereavement packet.

When the Dr. walked in, he was followed by 3 other people. Bob and I thought they were a bereavement team; I was waiting for the Dr. to grab the Bereavement packet I saw on the shelf, but when he didn't ...I breathed my 1st sigh of relief that week. Instead, he grabbed other packets and introduced us to the Cardiac RN, Kim, the Pediatric ICU Social Worker, Pat, and a student who was observing.

So, now for her diagnosis: Tricuspid Atresia. Her Tricuspid Valve never developed, which caused the underdevelopment of her right ventricle. In addition, she has Ventricular Septal Defect (VSD, a hole between her ventricles), and Pulmonary Stenosis. As he told us, it's a serious heart problem, but with 3 surgeries they can "re-pipe" her heart. She'll never have use of the right side of her heart, but as the left side is strongest anyway, she can survive without. Strangely, the VSD is what's helping her heart to function right now, in utero. Once she's born though, she won't have the ability to properly oxygenate her blood; she'll be cyanotic or a "blue baby."

Details on her diagnosis are here:

Essentially, she'll be facing 3 open heart surgeries (OHS): the 1st within a week of birth -- she'll receive a BT (Blalock-Taussig) Shunt; the 2nd when she's 4-6 months old -- a bidirectional Glenn procedure; and 3rd when she's 2-3yrs -- a Fontan procedure.

So, her prognosis for this is fairly good, barring any complications with surgery. Dr Menon told us life expectancy with this condition is now 60-70 yrs; she won't be an Olympic athlete, but she also won't be restricted either and she shouldn't need a heart transplant. He also told us that it's not a genetic condition, heart defects of this nature occur in 1 out of a 100 babies.

He did caution us however -- a final, definitive diagnosis cannot be made until she's here, and they can do an echocardiogram directly on her. As he said, her condition is relatively set, but other items may appear later, such as the connections with her coronary arteries.

But, considering Bob and I were expecting the worst (termination of the pregnancy), we were relieved after the appt that something can be done for her. At least we know what we're up against.

The Ultrasounds

So we go in for our 1st ultrasound and oh my God, it's another GIRL! All I can think is, double the trouble! The Tech shows us everything on our baby girl, but tells us she's having trouble viewing her heart. No bother though, we'll just have to go back for another ultrasound.

3 weeks later, it's the day before Halloween, and time for the next ultrasound. I tell Bob to stay home with Cate and I go alone, since there wasn't supposed to be anything to worry about... WRONG! I felt my heart racing as I realized the Tech kept scanning the same area of the baby, and she wouldn't tell me why ...but obviously something was up. After what seemed forever, she told me she was finished and said she was so sorry -- something was wrong with the baby's heart, and the radiologist would have to confirm before they could tell me anything.

8 agonizing hours later, our OB finally calls and tells us, "It doesn't look good," that her right ventricle is abnormally small, she has a hole between her ventricles, and it doesn't look as though her Pulmonary flap is functioning at all. He told us we'd need to see a Pediatric Cardiologist at Primary Childrens asap, but that we should expect the worst.

One of my favorite holidays literally turned into a nightmare. I started my own research on Halloween night as Bob took Cate trick-or-treating; I knew I shouldn't have, but I couldn't help myself, and our Cardiology Appt was still 5 days away. I was able to pinpoint about 4 different diagnoses (one of which ended up being correct), but nothing I found online had a good outcome.

Bob and I both agreed that those last days of October/first days of November, hands down, were the worst of our lives. We just wanted to know what was wrong with our baby.

A Bit of History

Ok, so, where to begin. As this blog thing has been suggested to us as both therapy and a means by which to provide updates, I guess I needn't go back too far. I mean, those who know us ...know we've got a happy family that we started well before marriage, with the arrival of our first born, Baron ...a very big, very lovable German Shepherd (who turned 10yrs old on 02/06/2009). Then came the house, then came marriage, then came Joanita Cate Goodson ...a beautiful, 8lb 10oz, baby girl born 4/27/2007. She has changed our lives in the happiest, most tiring fashion!

We knew we didn't want her to be an only child ...what fun is that? So we were thrilled when we found that Halloween 2008 yielded us with another baby. However, we found out in February 2009 that it wasn't meant to be; we had lost our baby weeks earlier.

Seeing as how turning 39 brought me that much closer to the feared 4-0 mark, we didn't waste any time trying again. My birthday weekend turned out to be quite the celebration ...a month later, Bob got a positive pregnancy test for Father's Day! Though we were a bit more guarded and private with our elation, we were both so thrilled to have another one on the way.

The Dr. must have sensed our apprehension; when we were well out of our 1st trimester and had a 2nd quick ultrasound to show she was, in fact, alive and well, the Dr. looked at us and said, "OK you two, you're allowed to be excited now!" And that was the point which I finally tried to let my guard down. In hindsight, I wonder if I should have, or if I ever really did ...something had me dreading just about every appointment with this new OB.