Ready or not...

...here she comes!

The doctors have finally collaborated and agreed upon a due date and arrival method for Miss. Brynn. August 17th at 7:30am by scheduled C-section! Tony and I were relieved and excited to finally have a time frame in mind and to know how Brynn will arrive. At least if everything goes according to plan...

This last week has already brought several surprises and unexpected forks in the road. As you might have read on Facebook earlier this week, all of the "back spasms" I have been having are actually contractions. This was discovered at 12:30am last Saturday after they started happening every five minutes. A trip to labor and deliver and five long hours on the monitor confirmed this. Luckily, IV fluids and a very low dose of morphine was able to slow, then completely stop, the contractions. They are not entirely sure what was causing the contractions (blood and urine work ruled out a kidney stone or UTI) which is a little scary because that means they could come back. I am trying to stay hydrated and as well rested as possible.

This is proving to be somewhat difficult since my OBGYN has refused to allow me any disability leave before the C-section. The August 5th date we had agreed upon last week was changed to August 15th (yes, two days before I am supposed to deliver) after the C-section was scheduled. Luckily, I am blessed to have very understanding co-workers and supervisors who are looking the other way at my coming in to the office for only 2-3 hours a day.

We were also informed on Tuesday that the cardiology team now believes that something environmental must be causing the PDA to restrict. They have asked me to start keeping a strict food journal and to stop all medications. This news is frustrating since the first question I asked six weeks ago was "Is there anything I could be doing or not doing that might be causing the restriction?" and was reassured over and over again that there was nothing to support this claim. There still isn't any literature or study that supports the claim but the doctors are trying anything they can in an effort to stop the restriction.

Today was a somewhat difficult appointment at the Heart Center. Dr. Doom is proving to actually be much more caring and knowledgeable then we originally gave her credit for but she still likes to give us bad news so the name has stuck. :) The scans confirmed continued PDA restriction. Luckily, there is still no fluid around the heart and the pulmonary artery is only slightly smaller than it should be (indicating that the restricted PDA hasn't restricted blood flow and growth to other areas of the heart).

The doctor shared that she has spoken to several pediatric cardiologist from Canada to Florida, including the "grandfather" of pediatric cardiology who literally "wrote the textbook" and that none of them have ever seen PDA restriction in HRHS babies. For this reason, the doctors simply do not know what will happen after Brynn is born. She is currently being exposed to prostaglandins in utero but the hope is that they will be administered at a higher dose after she is born and this will allow the PDA to stop restricting long enough (hopefully several weeks) to give her the best chances for a successful shunt operation. If her oxygen stats are too low (say in the 30s) she will need immediate surgery (they have blocked off the OR the morning of her delivery to prepare for this scenario). However, this can be difficult since the shunt they will have to use might be too big for her premature heart, causing too much blood flow and causing her heart to work too hard. She will then most likely need tube feedings on special formula to speed her growth so that she can grow into her shunt. The doctor told us it is reasonable to believe that even a very sick baby like Brynn might be will be able to gain enough weight quickly to decrease the strain on her heart.

Best case scenario, her stats are stable enough (at least in the 60s or 70s) that she can spend a few more weeks growing after she is born before undergoing the operation. In the meantime, the continued restriction still worries the doctors so they are going to have me take steroids to help mature Brynn's lungs in case they decide to deliver her early. They are hoping that the restriction will have not progressed even more when we go in next week, increasing our chances of a crash c-section.

Tony and I are of course hoping for the same thing. I wasn't sure we would make it to 36 weeks when they gave us the news six weeks ago about the PDA so if we do make it to our scheduled delivery date it will be a miracle in and of itself. We continue to prepare for her arrival, and are so grateful for the time we have been given to get as prepared as possible for her birth and delivery. Please pray that Brynn is able to hang in there a few more weeks and that the doctor's predictions and hopes for a stable delivery are correct. We are holding on to the fact our baby's kicks and movements are strong and that her premature arrival is just another sign of how she simply can't wait to be with us.

Meltdowns and due dates...

This has been a difficult and exhausting week.

It started with a frustratingly slow referral from my OB for physical therapy. I have been experiencing increasingly bad back, hip, and leg pain that has decreased my mobility and caused bouts of insomnia. The spasms are so intense I often wake up in the middle of the night and hunch over the toilet due to nausea caused by the pain. Walking, sitting, and lying down are all pretty excruciating most of the time. Despite my frequent complaints and requests my otherwise competent OB is apparently unfamiliar with how to make a referral to an in-network physical therapist covered by my HMO. Three weeks and 4o phone calls later I finally have my first appointment scheduled...in 10 days.

In addition, we received two of what I assume will be many dreaded letters from our HMO reporting "the requested service has been denied". Although these letters ended up being a misunderstanding due to our surgeon having two listings they still caused a series of nightmare scenarios in my head that all ended with Tony and I homeless and destitute due to medical bills and expenses not covered by our insurance. I am so grateful for my mother who happens to be a manager in my healthcare network. She picked up the phone or sent off emails countless times this week to get to the bottom of the letters and failed referrals. I don't know what I would do without her.

We had our appointment yesterday with the OB. I was looking forward to firming up delivery plans and scheduling my last day of work. With all of the stress facing us and all of the physical pain I have been in it has been difficult getting up and going to work every day. My job requires a great deal of empathetic nurturing and can be physically demanding, especially during the summer. I have really had a hard time keeping up with my responsibilities and being emotionally available to my clients and their families. It didn't seem like a completely off the wall time to bring up starting my leave on disability.

Apparently, I was way out of line. Despite being told by the neonatologist last week that I should expect to be induced around 36 weeks (3 short weeks away), I apparently cannot start my disability leave a day before the 36 week mark. My doctor even went so far as to say I was jeopardizing her medical license to even be asking. She also informed me that she opted to not take her leave at all when she was pregnant and "worked right up till the end.". Thanks for sharing! She finally agreed that I fall into a high risk pregnancy category and could be delivered at 39 weeks, allowing her to start my leave at 35 weeks (approximately August 5th). She also reported that the likelihood of them inducing me at 36 weeks was very low due to the risks it presents to the baby.

So...imagine our confusion today at the Heart Center when the cardiologist told us not only should we expect to deliver at 36 weeks but that she is recommending they don't even try to induce me and just schedule a C-Section. Again, this afternoon was filled with frustrations. The technician was very sweet but little Brynn refused to get into a good position (she only wanted to show off the side of her heart that functions perfectly) and as a result it took them 90 minutes to try and get decent images of the duct (I am very very sore). Finally, the tech gave up and just went to get the doctor.

We were hoping for the same sweet doctor who has followed us the last three times and were disappointed to come face to face with the cardiologist we call Dr. Gloom and Doom. Her bedside manner leaves something to be desired to say the least. She informed us that the duct is "progressively restricting" and that she feels this will cause additional complications and health risks at the time of delivery. For this reason she doesn't feel it is safe to induce me since I could still take hours or even days to deliver and she believes the medical team needs to be prepared and present at the moment of birth. She requested that we come back next week for an additional echo and that we ONLY BE SEEN BY HER for the remainder of our echos.

I told her the OB's concerns about delivering the baby early. She said she will call the OB with the echo's findings. I will let them duke it out. I contacted the OB by email as well to inform her, and I emailed the cardiologist Tony and I like and feel most comfortable with asking her to review the scan and give us her medical opinion.

Like I said, it has been a exhausting and frustrating week. Luckily, I am so blessed to have such a wonderful and supportive husband. And we are so lucky to have such incredible friends and family who keep our spirits high with their hope and prayers.

So it looks like we might get to finally meet our little Brynn in as little as 3 weeks. It certainly seems like she cannot wait to get here! Our goal six weeks ago was to make it to 36 weeks (which they told us would probably not happen) so I am grateful and prepared to deliver her then if that is what they tell me is best. Please pray that no matter how Brynn arrives she will be given the best care and the best chance possible.

I will never get sick of hearts. :)

These last two weeks have been a busy time for myself and Tony. We got a welcomed break from doctors appointments but our planning and preparing for Brynn's arrival has certainly picked up!

Last Tuesday Tony and I met with the cardiothoracic surgeon who will operate on Brynn's heart and the neonatologist that will care for Brynn right after she is born. The night before our appointments we sat together anxiously reviewing our list of questions. We worried that we wouldn't like him or that we wouldn't be able to trust his abilities. That morning the anxiety only increased. As we sat in the Falk Cardiac Research Facility we both had the realization that this man literally holds our daughter's life in his hands. What if we didn't ask the right questions? What if he couldn't provide the answers we were looking for? Both Tony and I had such a sense of wanting to be as prepared and as informed as we possibly could be for our daughter. It occurred to me that this was so important; our parents should be there with us. But just as quickly I realized: we are the parents now!

I was embarrassed by my damp handshake until I realized that one of the leading cardiothoracic surgeons in the world probably doesn't shake many dry hands. :) Luckily, Tony and I felt very at ease in his presence. He reviewed each surgery in detail with a model of the heart. Most of it was information we had heard before but it felt totally different coming from the man who would actually perform the surgery. He gave us a lot of helpful information we hadn't known before too. He informed us that Brynn should never have to be put on a heart/lung machine during any of the surgeries, since all of the operating will be done on the outside of her heart. The surgeon also told us that the first surgery should be the simplest to perform (they insert a tiny piece of plastic (shunt) into her PDA (duct)). However, the period following the surgery will be the most tenuous for her. Her whole circulatory system depends on that little piece of plastic and anything from getting sick, to an infection or pneumonia could be life threatening.

The good news is that four months later the second surgery will be performed and Brynn's health and energy levels should increase greatly! He told us that a program has been started through the hospital that will help us monitor Brynn's health and heart function between her surgeries (we will of course be seen regularly by her cardiologist and pediatrician as well) and that since this program has started they have not lost a baby in between surgeries.

In addition, he told us that tricuspid and pulmonary atresia (on the right side of the heart) is more rare than the valve atresia that effects the left side of the heart, but it is the better of the two to have. Basically, Brynn has the side that is the stronger pumper. Among other things, this means that I might actually be able to breast feed! Only 30% of HRHS babies go home from the hospital with feeding problems since they generally have the strength to feed normally and can gain back their reflexes (as opposed to HLHS babies where close to 70% need feeding tubes). He also informed us that our initial hospital stay should be roughly 2-3 weeks, much shorter than the 6 weeks or so I had been anticipating.

The scariest thing he told us was again about that darn little duct. He said in his 25 years as a surgeon he has never seen one close before a baby is born but that doesn't mean it isn't possible. If it does close we are looking at a crash C-section followed by immediate open heart surgery (think OR table in the same room I deliver in) to open the valve and save Brynn's life.

The neonatologist was also very helpful and informative. She gave us a tour of the NICU, where Brynn will be brought immediately after she is born to be stabilized and monitored before her first surgery (she will recover in the cardiac intensive care unit). She took us through step by step what to expect, who will be in the room, and how to prepare for the delivery. She told us that most likely they will induce me around 36 weeks. If the duct continues to get smaller the risks are just too great to wait and let me go into labor naturally. At 36 weeks it will be safe enough to deliver her without a huge risk that her lungs wont be developed enough. This will also allow the OB, neonatologist, cardiologist, and surgeon to coordinate and prepare for the delivery. So we might actually get to pick our due date!

Last week, we also got another huge step closer to preparing for Brynn's arrival...we had her baby shower! My mother in law and her good friend Jody gave us the most beautiful shower I have ever been to. Every detail was perfect from the little homemade tea sandwiches to the shower games to the beautiful decorations. We were blown away. I was worried that people wouldn't feel comfortable talking about Brynn's heart or acknowledging the difficult health problems she is facing. But from the moment we got there women gave us their well wishes and told us about their prayers for Brynn. I was especially blown away by my mother in law's co-workers, many of whom I have never met. I was so touched by their words of hope and encouragement. The day was a perfect balance of celebration and supportiveness.

Everyones generosity was incredible. People drove hours to be there, and my sister even flew in from NYC for the weekend just to attend. It meant so much to me to have her there. My friend Amy, Aunt Martie, and Aunt Jeanie made Brynn beautiful blankets and quilts I can't wait to wrap her up in. Jody gave me a beautiful heart necklace with Brynn's name engraved on it. And the clothes! Clothes, clothes, and more clothes! Brynn will be the best dressed baby on the planet! I cannot wait to put her in every little outfit. It will be a day I will cherish forever.

We go back to the OB and heart center this week so I should have more updates soon! Thank you to everyone for all of your support, prayers, baby gifts, and positive thoughts. Tony, Brynn, and I have never felt more loved or cared for.

Two more weeks!

Friday we received some welcome news from the OB and the Heart Center: The duct hasn't changed in size since last week. Both the OB and the Heart Center reported that Brynn's heart function looks good and she continues to get bigger every week.

All of my blood work came back normal and my weight gain is steady (measuring exactly 30 centimeters at 30 weeks). The OB told us that they don't believe a closed duct will have a huge impact on Brynn's oxygen supply or heart function while she is in utero because she gets her oxygen supply from me. Physiologically, very little blood is currently being pumped through the duct at this time anyway, and that it closing would not change that. The problem would arise after she is born and no oxygenated blood is being pumped through her body due to her heart malformation. It will be critical to reopen the duct as quickly as possible to prevent brain and organ damage. They will due this by administering prostaglandins immediately after birth (something they would do anyway since the duct needs to remain open in HRHS babies). She also explained the difference between the baby being "in distress" (super emergency) vs. "compromised" (critical but not necessarily life threatening). Unfortunately, there is no real way for me to tell if either situation is occurring unless I am hooked up to a monitor. For that reason she encouraged me to keep track of all fetal movement and to come in immediately if I feel like Brynn isn't moving as much or as often. I'm trying not to make myself crazy keeping track of this. Exp: I haven't felt a kick in the last 20 minutes. Should I call the doctor? Should I change positions? Is she just sleeping? You get the idea.

The Heart Center visit was also very promising. We had a really sweet (and gentle!) technician and Brynn was in the perfect position for good views of the heart. She was very fast and gave us a some views of the rest of the baby (she kind of looked like a human pretzel all curled up in there). We got the same doctor we've seen almost every time and she gave us the green light to come back in two weeks instead of one. All in all, we spent less than 3 hours at the doctors office on Friday, which is sort of a record for us lately. We go back to Stanford on Tuesday for our consult with the surgeon and the neonatologist.

I am feeling much less panicked about an early arrival and am relieved that I will actually get to attend my baby shower, do some more nesting, and get a chance to say goodbye to my clients and their families. Despite the good news I am still feeling kind of blue. This emotional roller coaster of disappointment and hope is hard to keep up with. I am trying to practice emotional and mental flexibility so I don't get too attached to any one idea of how things are going to be but I still feel all over the place.

I have really been trying to cultivate peace in my heart about our situation. Tony and I made a choice to have this baby, knowing that the odds and chances of her having a long an healthy life are pretty slim. I am grateful for every day that she remains inside of me, for every kick, every hiccup, every flutter. And I know that I will be grateful for every precious moment we have with her after she is born. There is a lot of uncertainty in our near future but I am trying to remember how blessed we are to have been given this little life, given our supportive friends and family, and given the amazing gift of love and devotion to one another. Please continue to pray for Brynn and for our family that we have the strength and the faith to make it through whatever lies ahead.

Waiting is the name of the game...

Today seemed to set a precedent for what our lives will be like over the next few weeks...waiting.

We started the morning with my overdue glucose test which was surprisingly not as bad as I was anticipating. The orange stuff was gross and I felt pretty nauseous and headachy for the hour we had to wait to get my blood drawn but the whole thing went by quickly. Lately, I have really been trying to get over my whole needle and shot phobia. I think about all the needle pokes and tests my daughter will need and I know I cannot set a bad example or be a wimp when it comes to my own health. The stick really wasn't that bad and they only took two vials this time (last time it was eight).

Following the test we drove up to Stanford for our echocardiogram. More waiting. The hospital was busier than I had ever seen it. Kids being rolled around in wheelchairs with little bald heads and feeding tubes. Mother's being wheeled out with tiny babies. Toddlers bouncing off the walls with impatience. We waited almost two hours before being seen.

The wait gave us time to see observe an interesting and touching scene in the waiting room of the heart center. Two teenagers sat with their perspective parents, both waiting for the same test to measure their heart function. The teenage boy sat sleeping with legs propped up and his mouth hanging open. His mother talked to the nurse about his upcoming transplant. The girl sat across the room with her father (she had apparently requested that her mother not be allowed in). She began crying and arguing about having to take the test and feeling like she has no control of her own body. Her father began pleading with her to calm down and allow her mother to join them. Eventually, the boy woke up and walked over to them to let the girl know that the test is really not that big a deal and not to worry. Tony and I were really touched by how sweet he was and how reassuring he tried to be. It was at that moment I had a glimpse into our possible future.

As most people know I have made it very clear for many years that I did NOT want boys. I have been warned of how difficult and moody teenage girls can be but I have always thought that was a good tradeoff to rough and tumble little boys. Today's observation gave me another perspective of how reasonable and easygoing teenage boys can be and how chronic conditions can affect boys and girls differently. It seems like there will be different kinds of challenges all along the way. I hope that no matter how Brynn handles her health challenges we will be lucky enough to be sitting in that waiting room with her as a teenager (even if she won't let me be there with her). :)

We finally made it back for our scan with Olga again. This time it was much shorter, only about 25 minutes and not nearly as painful. I'm not sure how good the quality of the photos were but they did show that the duct has begun to close. The doctor reported that right now it does not seem to be affecting Brynn's heart function and she is tolerating the small duct well. However, they are not able to predict how she will respond if it closes completely or how long it could take to close up. So, I will now be monitored weekly by the Heart Center in addition to our OB appointments. If Brynn appears to be in distress, they will deliver her immediately. Ideally, we make it to 39 weeks or at least 36 weeks. We are 30 weeks on Sunday. I'm not sure how realistic it is that we will make it that much longer considering the duct has become noticeably smaller in two weeks. All we can do is hope and pray. The doctor tried to assure us that our surgeon has performed many open heart surgeries on premature babies but we also know that her lung and brain development at this stage would contribute to further complications. We of course had a million questions and always leave feeling like our five minute consults aren't nearly enough time to process or request adequate information.

The doctor did send us upstairs to the perinatal diagnostic center to meet with the coordinator who will arrange our consult with the surgeon that will perform Brynn's surgery. Following our consult we will get a tour of the labor and delivery unit and a rundown of everything that will happen after Brynn is born. They will also perform some additional scans to get a more accurate idea of how much she weighs and how everything else is looking. They will also perform the stress tests here to see how we respond.

We are so hoping that she can hold on for as long as possible. I feel so unprepared for her arrival. We haven't taken any of our childbirth, infant care, or CPR classes yet. We have very few of the things we will need to care for her at home. She doesn't have a pediatrician yet. We haven't even had our baby shower yet! Not to mention I don't know how this affects my role at work. I guess I really need to start terminating and transitioning my clients if I want to give them the chance for therapeutic closure. To know that Brynn could be born anytime between now and September makes me feel out of control and helpless. But...all we can do is wait.

Please continue to pray for Brynn that her duct stays open for as long as possible. And please pray that her mommy can get her act together and start getting prepared for Brynn's possible early arrival. We appreciate everyones support and understanding as we wait out these next few weeks.