Sunday, March 17, 2013

Heart Month!

As is my norm, I have gone far too long without updating the blog.  Shame on me!  

February, as many of you know, was Heart Month.  The point of Heart Month is to spread awareness of heart health, heart disease, and congenital heart defects.  There is even a week dedicated to CHD Awareness, which is great (though sadly, awareness is still lower than it needs to be).  

For February, I promised to post one Facebook status per day dedicated to heart/CHD awareness - and I told my Facebook September moms group (hi, Peas!) that I would share a fact per day with them as well.  Unfortunately, I made it about halfway through the month and then fell behind, and basically didn't post anything for the second part of February.  The good thing is, I actually had a few people ask me about it - "Hey, Dawn - I miss your heart posts, are you going to share more facts?"  Since going back and flooding my Facebook all at once with heart facts might be a bit much, I figured I would dedicate a blog entry to Heart Month and CHD Awareness, with 28 total facts/tidbits to represent each day of February.  Some will be shared from what I already posted on Facebook, and much of the information will be new.  So, please read, enjoy, and SHARE SHARE SHARE with everyone you know.  Heart health and CHD awareness are so, so important - thank you for helping to spread the word and educate others!

Heart Facts!

1. 1 in 100 babies will be born with a congenital heart defect.  

2. A pulse-oximetry test is a simple, non-invasive test that can be done on newborn babies to help detect congenital heart defects. At the federal level in the United States, it has been recommended that pulse-ox testing be part of the standard newborn screening - however, not all states are required yet to do this test. If you are pregnant, please ask for a pulse-ox when your baby is delivered - and if you know others who are pregnant, spread the word!! 

3. Colby Groom had two back-to-back open heart surgeries right before his 10th birthday. Afterward, he was inspired to raise money for heart research and worked with his dad (a winemaker) to create Colby Red wine. Check them out - we just bought some today!

4. There are 35 different types of Congenital Heart Defects. Little is known about the cause for them, and there are no cures for any of them (though thankfully there are many successful surgical procedures to help address them).

5. As medical care and treatment have advanced, infants with congenital heart defects are living longer and healthier lives. Many now are living into adulthood. It is estimated that nearly one million adults in the United States are living with a congenital heart defect.

6. Many CHDs are unfortunately NOT diagnosed until after the baby is born. If you are pregnant please ask the following five important questions at your 20 week ultrasound and make sure you get clear answers - and if the doctor can't answer your questions, DEMAND a follow-up ultrasound to get a closer look at your baby's heart: 

7. February 7-14 is CHD Awareness week! Illinois is one of only 28 states who have officially recognized this week for CHD Awareness... you can view the list on; if your state isn't listed, do something about it! Help spread awareness!!

8. There are 5 key "H.E.A.R.T." signs of CHD to look for in a newborn baby: 1) Heart rate: too fast or slow? (normally 100 to 160 beats per minute) 2) Energy & Feeding: sleepy, quiet, floppy, too tired to feed or falling asleep during feeds? 3) Appearance: a pale, waxy, dusky, blue, purple, mottled or grey colour may mean that not enough oxygenated, red blood is getting to the body (normal oxygen saturations are 95-100%) 4) Respiration: breathing too fast or slow? (normally 40-60 breaths per minute) 5) Temperature: cold to touch – particularly hands and feet?

9. Charles "Peanut" Tillman of the Chicago Bears has a daughter who had a heart transplant as an infant, and Greg Olsen of the Carolina Panthers recently had twins - one of them has HLHS.
10. There are an estimated 2,000,000 CHD survivors in the United States.

11. There are many support groups available for heart families. Mended Little Hearts is one them - it's national, but also has local chapters.

12. Adelaide was born with hypoplastic left heart syndrome (HLHS), which means the left half of her heart (the part responsible for circulating blood throughout the body) was severely underdeveloped. You can read more about HLHS here:

13. There is a seriously awesome Heart Mama Blog community on the internet. So many of the friends I've gotten to know throughout our journey have been able to elegantly and emotionally translate their experiences into beautifully-written blogs. Throughout heart month, Adelaide's story was featured on two different blogs - I've linked to her story specifically, but please take some time and read the rest of these ladies' blogs... they profiled so many amazing heart warriors throughout February, and also blog regularly.  

14. February 14 is Valentines Day, Heart Day, CHD Awareness Day, and Donate Life Day! So many things to celebrate. Please take some time today to kiss, hug, and celebrate with your loved ones, and say a prayer for those who have donated life so that others may continue to live.

15. Did you know that many infants born with a congenital heart defect will have life-saving surgery within the first few days of life? Their heart is roughly the size of a walnut when their first heart surgery is performed. A WALNUT. That’s nuts. (Pun 100% intended.) Thank God for skilled surgeons who are able to successfully operate on such tiny babies!

16. Though infant heart transplants can be the ultimate life-saving miracle, there are so many mixed emotions behind the whole idea of what a transplant involves.  Read one mother's story here:

17. Build-a-Bear has partnered with the Children's Heart Foundation to raise money for CHD research.  Read about it here:

18. An approximate 100-200 deaths are due to unrecognized heart disease in newborns each year. These numbers exclude those dying before diagnosis.  CHDs are the most common cause of infant death due to birth defects.

19. Most causes of CHDs are unknown. Only 15-20% of all CHDs are related to known genetic conditions.

20. Most CHDs are thought to be caused by a combination of genes and other risk factors, such as environmental exposures and maternal conditions. Because the heart is formed so early in pregnancy, the damage may occur before most women know they are pregnant.  Environmental exposures that may be related to risk of having a CHD include the mother’s diet and certain chemicals and medications. Maternal diabetes is a recognized cause of CHDs. Maternal obesity, smoking, and some infections also may raise the risk of having a baby with a CHD. Preventing these risk factors before a pregnancy is crucial.

21. The most common form of CHD in children is the ventricular septal defect - a hole between both main muscle chambers, or ventricles, of the heart.  The severity of the defect depends on its size and other associated anomalies.

22. It is commonly believed that CHD can not be prevented.  However, to minimize the risk factors you CAN control while pregnant, there are steps you can take.  In particular, women of childbearing age should take multivitamins containing folic acid on a daily basis both before and during pregnancy, avoid tobacco and alcohol use, use only medications necessary for maternal health, and achieve a healthy weight before pregnancy.  Women with diabetes should be in good glycemic control before becoming pregnant.  Planning for pregnancy may help avoid inadvertent harmful exposures to the fetus in the first trimester, when mothers may not yet realize they are pregnant.

23. Lurie Childrens Hospital, where Adelaide receives her care, is nationally ranked in 10 pediatric specialities - including pediatric cardiology & heart surgery.  You can read more about it here: 

24. Speaking of Lurie - until June of 2012, it was known as Childrens Memorial Hospital.  On June 9, 2012, they moved from the old hospital in Lincoln Park to a brand new, state-of-the-art facility in downtown Chicago.  They moved 126 patients in 14 hours - can you imagine the planning and coordination it took to do that successfully?!  View some pictures from the day here: 
25. Snowboarder Shaun White was born with a CHD called Tetralogy of Fallot.  Though he has gotten a lot of snark in the heart community for not being a vocal advocate for CHD awareness, he has publicly addressed his CHD, though minimally.  Would I love to see him use his fame to spread the word about CHD awareness?  Yes.  Do I think he could raise a crapton of money for CHD research by hosting just ONE well-publicized, maybe televised, snowboarding event where he donates all proceeds to the Childrens Heart Foundation?  Definitely.  But, ultimately it's his life and his decision as to how he does or doesn't use his experience to help others... I personally wish he would, but no one can force him.  It could be that he just doesn't feel too connected to his CHD since he was so young when he went through everything, but again - it's his life, his decision.  Here's an article from 2002 where he talks briefly about his TOF: 

26. Many children born with CHDs experience delays related to physical development, cognitive development, and/or feeding and growth.  Often, these delays are due to being flat on their backs for so long prior to/after surgery, or being on a breathing tube.  However, many of these children experience great success through working with occupational, physical, and speech therapists - and many heart warriors end up right on track developmentally, even if it takes them a bit more time than their peers.

27. The human heart does the most physical work of any muscle in the body throughout a lifetime. 

28. As I finish this blog entry, I am watching my little heart warrior scurry around her play area, picking up toys and dropping them over the edge of her play gate.  She is on a mission - busily running from one side of the room to the other, collecting her furry friends and moving them around.  She is babbling to herself, squealing with joy, and grinning like crazy.  I owe this typical morning not only to the family who made the decision to donate life in their time of grief, and not only to our amazing team of doctors, nurses, and surgeons at Lurie Childrens who have spent countless hours with us making sure Adelaide is doing as well as possible, but also to my friends and family - they have supported us through our worst times over the past 18 months, and celebrated with us in our victories.  Without all of you, we wouldn't be in nearly as good a place as we are today - so thank you, from the bottom of our hearts.  

Lots of love to you all, and thank you for reading this blog entry - I know it's long, but it's very important to me, and it means so much that you took the time to read it!    

Friday, January 11, 2013

Playing Catch-Up - Waiting for the Norwood

I feel as though every time I find the time to sit down and blog here, I start by commenting on how absurdly long it's been since my last post.  And then I say that I'm going to blog more regularly starting... wait for it... NOW.  And then... months pass.  So, let's try this again.

I'm not sure it's realistic at this point to capture every detail of Adelaide's journey, as it's now been well over a year since she was transported to Childrens Memorial Hospital... and almost 15 months since her transplant, if you can believe that!  BUT... I am still going to try to write out as much of her story as possible.  Regardless of whoever may be out there still checking this blog (because let's face it - who wants to read a blog where the author never updates?  Ahem...), I know that I will be happy if I can record her story at least for a personal momento.  And to show Adelaide someday, too.  :)

So last I wrote, we were all of three days into Adelaide's stay at CMH.  We had just heard from her nurse that Adelaide had an infection in her bloodstream, likely due to the IV in her belly button.  Her surgery, originally scheduled for 9/16/11, was going to have to be postponed.

Right before we heard about Adelaide's infection, Brian & I had decided to share news of Adelaide's heart defect and upcoming surgery on Facebook.  While we had posted on our pages when she was born, and shared pictures, we hadn't said anything since we found out about her HLHS.  We wanted to make sure we were able to personally tell family and our close friends first, so none of them would find out second-hand and/or online.  So, I posted a status that read,

"Brian and I found out early Monday morning that our little Adelaide has a severe but operable heart defect. She is scheduled to have surgery on Friday.  If you pray, please pray for our little girl.  Either way, please keep our baby girl in your thoughts.  We will provide updates when we're ready."

Yes, I went back on my timeline to get the exact status I posted... and yes, I just re-read all of the supportive and thoughtful comments people left, and it brought tears to my eyes (as it does every time I think about or re-read them).  We are truly blessed to have such amazing, supportive, caring, and kind friends and family.  One of my friends, Meghan, shared in a comment that she had another friend whose daughter had open heart surgery at 5 days old, and she offered to connect/introduce me to her.  I gladly took her up on this offer.  As it turns out, Meghan's friend is named Erin, and Erin's daughter Jane was also born with HLHS.  Erin & I became Facebook friends and over the course of the next several days, we exchanged many messages.  She was a lifesaver during a very difficult time!  Jane, by the way, is post-Fontan (the third corrective surgery in the series for HLHS) and is doing very well.  And, she's super cute.  :)

Incidentally, my friend Jenn also had connected me with her friend - ALSO named Erin - a few days prior when we first heard of Adelaide's diagnosis.  Jenn's Erin has a son named Jonas who was born with HLHS.  Jonas is an amazing, adorable little rockstar of a toddler and though I have never met him or his mother in person, I cannot wait to do so someday!!!

Okay, so we went to the hospital Thursday of that week, spent time with and snuggled Adelaide, and talked to a multitude of doctors, fellows, nurses, and hospital staff.  I think that Thursday was the first day we met Dr. Nguyen, or Winston as most people called him.  Dr. Nguyen was one of our saving graces at CMH.  Not only is he a fantastic cardiologist, but he has the best bedside manner of almost any doctor I've ever met.  He is very soft-spoken, yet knowledgeable... honest, yet comforting at the same time.  Any time we spoke with him throughout our stay at CMH, he would give us the straight-up story of how Adelaide was doing, make sure we understood what was going on, ask us questions, tell us to take care of ourselves.  He was - and still is - amazing.  When we met him for the first time, he spent some time reviewing Adelaide's condition with us and told us she looked pretty good aside from the mystery infection.  He was hopeful that we would be able to schedule her surgery for early the next week.

Over the course of the next few days, we settled into what would soon become our routine at Childrens.  Spend the day with Adelaide, talk with a handful of doctors and/or fellows throughout the day, get to know the NICU nurses.  Catch a meal or two in the hospital cafeteria.  Drive home to sleep at night.  Wake up early to do it all over again.  And for me, part of my routing was pumping every three hours.  Since Adelaide wasn't eating as we waited for her surgery (she was being given IV nutrition), I was building up quite a nice stash of milk for her.  (Side note: eventually it would get to the point that the nurses at CMH would tell me to start freezing my milk at home because my allotted space in the hospital freezer was full - as was the backup space they gave me for the overflow!  This was a great problem to have.)

Honestly, the days leading up to Adelaide's surgery are all kind of a blur at this point.  I don't know if they would be any clearer had I actually written this a year ago - they were just so full of information and stress that I don't remember many details.  I do know that we spent a ton of time at the hospital and cuddled Adelaide the majority of the time we were there.  We also kept in touch with our family and friends, mostly through Facebook, to provide updates on how Adelaide was doing and when her surgery would likely take place.  And we felt a ton of support from our friends and family, who not only reached out to us to see how they could help or what they could do, but also shared our story with their friends, families, churches, coworkers... they spread the word about Adelaide's story far and wide, and ultimately there were SO many people praying for her, thinking good thoughts for her, and sharing her story.  I truly believe that the tremendous amount of love spread for Adelaide is one of the reasons she (and we!) remained so strong through everything.

We found out early the next week that Adelaide's infection was on its way out and that she could likely have surgery on Wednesday, 9/21/11.  Dr. Nguyen told us that we should plan on that date for surgery and if needed, we could move it; however, he felt confident that Adelaide was going to be in good shape to move forward with that date.  We let our family and friends know and started getting ready for surgery day.

Tuesday, August 21, 2012

First Days at Childrens Memorial

Hello, everyone!

Want to hear something crazy?  In two and a half weeks, Adelaide will be ONE.  ONE YEAR OLD.  How time flies... it's so weird to think that only eleven months ago we were in such a different place.

At the end of my last entry, I left off with telling you how the Central DuPage Hospital chaplain blessed Adelaide while she was in the NICU awaiting transport to Childrens.  After her blessing, Brian and I got to spend some time with her.  We held her little hands, talked to her, and got to know the CMH transport team a bit.  They were an amazing group of people - I think there were four of them - and they described exactly what they were going to do as they transported her to Childrens.  Of course, most of what they described went right over our heads, but they were very nice and we were reassured that Adelaide would be in good hands for the ride to Childrens.  I don't know exactly how long we stayed down in the NICU, but eventually it was time for them to take Adelaide to Childrens, so we said our "see you laters" and left before they took her away.  I didn't want to see them taking her, so I thought it would be easier if we left first... though it certainly wasn't easy.

Once we got back up to my room, Michie (one of my favorite nurses from CDH) came in and gave Brian and me both huge hugs.  I cried on her shoulder for awhile, and then she left to go get a breast pump for me and made me order breakfast.  (I remember very specifically that I ordered pancakes, scrambled eggs, and turkey sausage... and then I couldn't eat any of it.)  Anyway, I won't go into detail about the breast pump, but let me just say I am INFINITELY grateful for Michie and the fact that she basically bossed me around that morning... in a very nice way of course, but I needed her direction because I had no idea what to do.  She told me she was going to bring up a breast pump so I could start pumping and save milk for Adelaide.  She let me know that they would keep it at CMH and give it to Adelaide whenever they could, though possibly not until after her surgery.  So, with her direction, I started pumping that morning.  I cried the entire time.  Compared to breastfeeding my baby girl, pumping felt so impersonal - so unfamiliar, so unnatural.  As I sat there, I just couldn't stop crying and I missed Adelaide so much.  Looking back now, I realize that I should have looked at pumping as something I could do for my baby girl while I was otherwise feeling so helpless - and eventually, that IS how I looked at it - but the first few times were just horribly, horribly depressing.  I felt empty, alone, scared, and physically like my body was being taken over by something beyond my control.  (Which honestly, it kind of was.)  

After a few pumping sessions, a few bites of food, and a LOT of tears, Brian and I managed to finish packing up my hospital room and got ready to leave.  Before we left the hospital, we both got the TDAP vaccine... it was something we were both planning to do anyway, but especially given the scary turn of events, we both wanted to do everything possible to keep ourselves and Adelaide healthy.  

After I was discharged, Brian went to get the car and I sat on a bench in the lobby of the hospital.  I saw a few people come in carrying pink "congratulations!" balloons, and I of course started crying again.  Once Brian pulled the car around, I got in and carefully put the seatbelt across my lap, and we drove home.  

Walking into the house without Adelaide was sad (understatement), but as soon as we got home we busied ourselves getting ready to head into the city to visit her.  Brian started packing overnight bags, and I made some phone calls to tell our close friends what was going on.  Early in the morning, we had called our parents and siblings and a few friends, but we hadn't been able to call everyone before I was discharged.  Surprisingly, I made it through most of the phone calls without totally losing it... I got chocked up a few times, but I think because I was preparing myself for other people's reactions, I wanted to sound positive and not scare people too much - even though I was so, SO scared.  I tried to focus on the great reputation of Childrens Memorial Hospital, and tried to sound optimistic when telling people what was wrong, and I think doing that helped me feel a tiny bit better about things.  My good friend Melissa happened to be at a conference not too far from CMH that day, so when I called her, she offered to meet us at the hospital if we were up for company.  I told her that would be great, and told her I'd call when we were close to the hospital.  

After we got ready, we headed out to the hospital.  We had to stop at Target to pick up a prescription for me (pain meds - C-section recovery = NOT fun) and a few other random things.  I got an iced coffee from Starbucks, and I remember thinking I would have enjoyed my first post-pregnancy "full-strength" coffee more had the circumstances been different.  However, it was still pretty tasty.  

I kept crying off and on as we drove to the hospital, and Brian was doing a good job of keeping it together... but I very specifically remember that as we were getting off of 290 and on the 90/94 ramp, he broke down.  He started crying and asking, "Why?  Why did this happen?  She's so small... she's so small."  As soon as he started crying I suddenly stopped and focused on trying to get him to calm down a bit... for one, because I hated seeing him so upset and scared, but also, he was driving and I was a little nervous.  I asked him if he needed to pull over, but he said no, and that he just wanted to get there as soon as possible.  Don't worry, he didn't speed or drive recklessly, and somehow he took a deep breath and was able to focus on driving and we made it to CMH safely.  

When we walked into the hospital lobby, we checked in and immediately saw Melissa.  I ran over to her and she gave both of us hugs, and we all started crying.  After a few minutes, we headed upstairs to the 8th floor - the NICU.  We were greeted by a receptionist who asked us to sign in and gave me & Brian "NICU Parent" hospital bracelets. Then the three of us headed back to Adelaide's "pod" - the rooms in the NICU housed 8 babies each, split into two pods of 4 patients.  We had to go through an extensive scrub-in process (which soon became second nature)... wash hands and thoroughly dry them, then clean out under your fingernails with a plastic pick.  Next, the Avagard - a pretty intense hand sanitizer - put one pump all over one of your hands and up to the elbow, making sure to focus on the nail beds and under the nails.  Repeat with other hand.  

After scrubbing in, we got to see Adelaide.  I was relieved to see that she still looked normal.  She was hooked up to a bunch of different machines/monitors and had a few IVs in, but overall, she still looked like Adelaide.  We met one of her nurses, who gave us an update on how Adelaide's day had been.  She basically said that aside from her critical heart condition, she was looking pretty good.  (This would be the "norm" for Adelaide, for the most part, throughout her hospital stay... even during her more worrisome days, she usually looked as good as she possibly could, all things considered.)

The nurse reassured us that we would be able to hold Adelaide the next day, and told us that we didn't have to adhere to visiting hours of the hospital - as parents, we could come see Adelaide anytime.  However, she did encourage us not to stay TOO late and to try to get some sleep that night, since the next day we would likely meet with a crap-ton of doctors and nurses who would brief us on what to expect for Adelaide in the coming week.  

I don't remember exactly what time we left, but eventually we did leave the NICU and headed to Pete's apartment.  Pete, my sister Christie's then-boyfriend-now-fiance, lives approximately one mile from CMH... and we are SO grateful for the fact that he opened his door to us while Adelaide was in the hospital.  When we got there, we chatted with Christie and Pete for awhile and then tried to get some sleep.  

Let me just take a minute to say that trying to sleep that night was pretty impossible.  Every time I would start to doze off, my alarm would go off reminding me to pump.  (Every three hours!)  Or, my alarm would go off to remind me to take my pain medicine.  (If I forgot a dose, oh, it was horrible.)  Or, I'd start to get tired and then my brain would start going crazy with everything that was going on.  Or, I'd just start crying and crying.  So among all of those things, I really didn't get much sleep.  

In the morning, Christie made us breakfast - toast and eggs - and she made coffee, too.  I found that even though I didn't think I would have an appetite, I was actually able to eat and was pretty hungry... which was good, because I needed to make sure I was eating enough and drinking enough water so I could keep pumping.  

After we ate, Brian and I headed to CMH.  We scrubbed into the NICU, met the nurse for the day, and were able to hold Adelaide!

I wasn't sure what to expect when the nurse asked if I wanted to hold Adelaide - when she asked, I said, "Are you sure I can?" because I wasn't sure how it would physically work.  The nurse reassured me that I could most certainly hold my baby and said that most of the wires/IV lines would be contained within the swaddle (blanket) Adelaide was wrapped in... aside from making sure she was close enough to her bed so the wires wouldn't get pulled too tight, there wasn't really anything to worry about.  So, I sat down in a chair next to Adelaide's bed and the nurse put her into my arms.  

I don't know if there is any way I can possibly put into words what it felt like to hold Adelaide for the first time after she was transported to CMH... I felt relief that she still looked okay, terror that she was so sick despite the fact that she looked "normal," sadness that I was in the setting I was in with her, nostalgia for "the past" (even though "the past" was just a few days ago), and fear that it was going to be the last time I'd ever get to hold her.  I think I held her for over an hour, during which one of the cardiac fellows came in to talk to us more about HLHS.  Her name was Dr. Perkins, and she brought in a diagram of a hypoplastic left heart syndrom heart.  She then explained the physiology of HLHS and went over the surgical reconstruction process with us.  We had heard the same information from Dr. Kumar while we were still at Central DuPage Hospital, but hearing it again helped us feel a little bit more familiar with HLHS... as familiar as new parents with a 5-day old baby could feel, anyway.  

Quick side note about Dr. Perkins, by the way... MONTHS later, at the end of March, we attended our dear friends Jenn & James' wedding and met their friend Wally.  Turns out, Wally is good friends with Dr. Perkins!  Such a small world.  

Anyway... back to the story.  After Dr. Perkins talked with us, one of the cardiac nurse practitioners, Page, came to the NICU to talk with us.  She explained that we were going to meet with Dr. Backer, the surgeon who would do Adelaide's Norwood procedure in a few days.  She told us that he would give us more details about the surgery and answer any questions we had.  Before we went down to see him, she explained that after our meeting with him, we would be asked to sign some consent forms for the upcoming surgery... permission to give Adelaide a blood transfusion if she needed it, permission to put her on ECMO if it was necessary (that one freaked us out).  When it came time to sign the forms, we read and signed those two, and I remember that Brian asked Page, "Do parents really NOT sign these?"  To us, it seemed simple - give the doctors permission to do whatever it took to save our daughter's life.  There was one consent form asking us if we would allow Adelaide to be part of a research study where they would give her an extra something-or-other medicine at some point... we declined that, because there were no proven good effects to it and we didn't want to risk interfering with her surgery/recovery/etc.

We went down to see Dr. Backer in his office, and he explained the three different approaches to treating HLHS.  The first was a three-step surgical/pallative approach that reconstructed the heart so the right ventricle could ultimately function for both the right and the (missing) left.  The second was transplant, and he explained that this option was not very often encouraged instead of the three-step surgical approach, due to the small number of donor hearts available for infants.  The third was compassionate care - where parents choose to bring their baby home and keep them as comfortable as possible until they pass.  We knew that compassionate care was NOT an option for us, and based on Dr. Backer's evaluation of Adelaide's current physical condition and the fact that he thought her to be a good candidate for the Norwood procedure (first step in the 3-step surgical approach), confirmed that we would like to move ahead with the Norwood.

After we met with Dr. Backer, we spent the rest of the day in the NICU with Adelaide.  We took turns holding her and took LOTS of pictures.  We hadn't taken many pictures the day before, I think because we were both a little afraid of the whole situation and I know for me, I originally thought, "Do I want pictures of her attached to all these machines?"  But as soon as we had left the hospital that night, I missed her face so much and I knew I would be taking pictures of her every day from now on - regardless of how many machines she was hooked up to.  So, we took pictures and cuddled with our little girl until it was time to go home.  This is one of my favorite pictures from that day:

After spending the day with Adelaide, we decided to go back home and to spend the next day at home as well... I was still recovering from the c-section and there wasn't anything "big" planned for Adelaide the next day, so we thought it would be best to try to rest as much as possible before the end of the week.  Her surgery was scheduled for Friday, so we figured we would spend Wednesday and Wednesday night at home and go back to see her on Thursday.  The NICU nurses told us we could call any time of day to check on her, and they promised that someone would call us if there were any updates or changes with Adelaide.  So, after a lot of finger squeezes, foot tickles, and kisses, we said good night to Adelaide and headed home.

The next day, we tried to get a few things done around the house - unpacking, laundry, re-packing.  I can't count the number of times I went into her nursery and just stood there, though.  We had a package of Pampers swaddlers from CDH that was opened, and this might sound silly, but I kept just smelling it and crying.  Literally, I would pick up the package of diapers, stick my face in it, inhale, and bawl my eyes out.  When we were at CDH, Adelaide wore the swaddlers, and that's what she smelled like... so I couldn't get enough of it.  And of course, it made me sad that she wasn't at home with us.  

That afternoon, my phone rang... it was the hospital.  We had called earlier to check on her a few times, and one of the fellows had called us with a question, so we weren't sure what to expect when the phone rang again.  Unfortunately, it was one of the fellows again, telling us that Adelaide's bloodwork had shown an infection and that they might have to postpone her surgery because of it.  She said she was doing well otherwise and was still stable, but that they wouldn't be able to do the Norwood until the infection was gone.  The fellow told us that they were going to start some general antibiotics until they could narrow down the cause of the infection, and once they did that they could more specifically target the infection.  She said that they suspected the infection might have been a result of the IV that Adelaide had in her belly button, but they weren't 100% sure.  We asked her to keep us posted and she said that of course they would.  After we hung up with her, I remember freaking out - of course after deciding to stay home for the day, something like this would happen... as if it weren't hard enough to leave Adelaide for the day - now we were getting news of an infection?!  

We decided to stay home overnight again, and called the hospital a few more times... thankfully there were no scary updates and Adelaide was still doing well.  Though we didn't sleep well that night, we at least got SOME sleep and rested up for the next day ahead.  We knew that once we returned to the hospital we would be in for a barrage of updates and hopefully some more information about the darn infection and what it meant for Adelaide, her surgery, and the days ahead...

Saturday, July 28, 2012

HLHS: How We Found Out

Well, over two months ago I said I was going to try to update my blog "within the next few weeks..."  As that was in April and it's now July, I obviously didn't follow through.  Going forward, one of my mid-year resolutions (why wait until New Years?) is to update this blog at least once a week, if not more.  So fingers crossed that I actually make that happen this time!

The last time I updated this blog with anything interesting, I left off right after my induction/Adelaide's birth.  Needless to say, a LOT has happened since then.  So, here goes my attempt at catching up and telling our story.  (Disclaimer - I just finished writing this entry and came back up here to warn you - it's long.  And rambly.)

Adelaide was born on a Thursday night - September 8 - at 7:25pm.  The three days immediately following her birth were filled with visitors, smiles, and lots of snuggles with our baby girl.  I couldn't get over how perfect and beautiful she was - I know every parent probably says this, but Adelaide is seriously the cutest baby ever born, and that has been true since the very first moment she entered this world.  I loved having people come visit us, and loved showing off my baby.  I was exhausted and sore from having a c-section, but that was all secondary to how happy I was.

I was worried that because she was born via c-section, Adelaide would have trouble breast-feeding, but she caught on like a champ!  She was eating well, pooping and peeing well, and checked out well each time the pediatrician on call came by.  We saw three different pediatricians while we were there, and they all commented on how great she looked!  One of them made a side comment that Adelaide looked a tiny bit jaundiced, but that it should probably resolve on its own.  I remember when I heard that, I got pretty worried... ironically, in hindsight, a little jaundice would have been nothin'.

Sunday night, our friends Jenn & James came to hang out and have dinner with us.  They left around 8:30 or so and Brian, Adelaide, and I settled in for the night.  As we had done over the past several days, Brian and I took turns snuggling Adelaide and we enjoyed our family time while we took turns saying how amazing she was.

Sometime close to midnight, I was in the rocker in our room when I felt a sharp pain in my leg.  I called the nurse, who came to take a look, and she then consulted with the OB on-call.  The OB decided that we should go down for an ultrasound of my leg, just to make sure there wasn't anything weird going on.  Because I had a c-section and was spending so much time laying in bed, there were a few things they wanted to rule out - including a blood clot (I was at a higher risk for developing one due to the fact that I wasn't moving around much).  The nurse asked Brian if he wanted to come down to the ultrasound with me, and offered to bring Adelaide to the nursery while we were out of the room.  Up until that time, the only time Adelaide had gone to the nursery was for her daily checks - weight, a few tests, etc.  Other than that, she had been rooming in with us.  I was a little nervous to leave her, but after the nurse reassured me that Adelaide would be okay and that they would NOT give her formula or a pacifier, we decided to leave her in the nursery and Brian went with me down for the ultrasound.  (Again, in hindsight - formula and a pacifier?  So not a big deal.  But at the time, I was ready to throw down if anyone even suggested giving her either of those two things.)

By the time we went down for my ultrasound, the pain in my leg was already long gone.  I was still nervous, though - I was convinced that they were going to find something, that I was going to need surgery, or something else extreme.  Maybe that was illogical, but I was running on VERY little sleep and obviously a little emotional/hormonal.  Luckily, the ultrasound checked out clear and the tech said there was absolutely  nothing he could see that would have explained the pain.  Relieved, we headed back upstairs to our room.

When we got there, the nurse told us that they were going to keep Adelaide until it was time for her next feeding, so I could get some sleep.  I didn't think anything of this and was excited for the chance at a few hours' rest.  We went into the room and went to sleep.

A little while later, I woke up to see a new doctor in our room, talking to Brian.  We hadn't seen him before, but as it turns out, he (Dr. Loughead) was a cardiologist from Childrens Memorial Hospital.  He was telling Brian that they had some suspicions that Adelaide had a serious heart condition and that they were running a few tests to confirm what they thought it might be.  Apparently, during my ultrasound (while Adelaide was in the nursery), one of the nurses noticed Adelaide breathing more quickly than normal and saw that she was a little bit discolored.  So, she called the doctor on call, and he said something along the lines of, "Well, it could be nothing, but there's a small chance it could be this... so let's do an echo and see what's going on."  "This" turned out to be hypoplastic left heart syndrome (HLHS) - a heart defect that involves the left half of the heart being severely underdeveloped and non-functional.

After Dr. Loughead left, Brian and I just laid together and I was crying my eyes out.  I had this horrible sinking feeling in my chest, and I couldn't stop bawling.  I tried to stay positive and think that maybe this was a mistake and that the tests would show there was absolutely wrong with Adelaide, but I knew deep down that we were in for some devastating news.

A short time later, another doctor from Childrens - Dr. Kumar - came into our room.  She had a packet of information with her and sat down next to my bed.  She broke the news to us that the echocardiogram had confirmed Adelaide's diagnosis of hypoplastic left heart syndroms.  She then reviewed the details of HLHS with us - symptoms, treatment, prognosis.  She told us about the three-part surgery series that Adelaide would go through to basically re-route the plumbing of her heart to help it function as a four-chamber heart, even though it was only a two-chamber heart.  She reviewed the survival statistics with us, and told us that the survival rate for the first surgery in the series (the Norwood Procedure) had a success rate of 95% at Childrens Memorial.  (Without surgical intervention, HLHS is almost uniformly fatal.)

While 95% sounds like a great statistic, of course all I could focus on was that other 5% - the 5% chance that the surgery wouldn't work and that I would lose my daughter.  I was a wreck, but Brian was very positive and tried to help me focus on the fact that 95% is a great number, and that Childrens Memorial Hospital (where Adelaide was about to be transported and where she would have the Norwood) was a very reputable childrens hospital.  Don't get me wrong - he was devastated as well, but he was amazing at trying to help me freak out just a little bit less.

Dr. Kumar left our room probably around 4:30am.  Before she left, she told us that Adelaide was currently in the NICU downstairs, and that the doctors were working to coordinate a transport team to take her down to Childrens Memorial Hospital in Chicago.  She assured us that Adelaide was stable and that we would get to see her before she was transported, but encouraged us to try to get some sleep first.  I asked her probably twenty times to make sure that our nurses let us know before Adelaide was transported - I was so worried that someone would forget to tell us and that we would miss the chance to see her before she was taken to CMH.  Dr. Kumar reassured me that no one would forget to tell us, as did our nurses.

For the next few hours, Brian and I tried to sleep, but the most we were able to "sleep" was for maybe 15 minutes at a time.  I kept waking up and crying, and Brian was mostly awake and trying to keep busy/distract himself.  Finally, around 7:30 or so, a nurse came to get us and brought us down to the NICU to see Adelaide.  

I had no idea what to expect when we saw her, but I was relieved to see that she still looked like our little Adelaide - honestly, she looked like there was nothing wrong with her, except she had a bunch of IVs coming out of her hands/arms.  Sometimes, HLHS babies need to be intubated (put on a breathing tube/machine), but thankfully Adelaide was strong enough that she didn't need that.  We were able to hold her hands and talk to her for a little while, and the hospital chaplain came down to the NICU and blessed her with us.  We got a "certificate of blessing" and talked with the chaplain for awhile; he was a very sweet man, and we told him the story of how the doctors had discovered Adelaide's HLHS.

I know I already told that story earlier in this entry, but on my end there's much more to the story than the actual events that unfolded.  In a nutshell, the nurses realized that Adelaide wasn't looking like herself while she was in the nursery, so they called a doctor who ordered some tests and discovered her HLHS.  But the longer version - the more complete version - involves way more than that.

I had a sharp pain in my leg that caused me to be sent down for an ultrasound.  This pain went away pretty soon after I had it, but it obviously caused me to have a scan of my leg done, and caused Adelaide to be in the nursery at the exact moment she needed to be - she needed to be there so the nurse could notice her strained breathing and call a doctor.  My leg checked out perfectly fine - there was no medical explanation for why I had that shooting pain.  However, I know that the reason I had that pain was so that Adelaide could be in the watchful eyes of the medical staff so they could discover her HLHS.  We were scheduled to be discharged only 12 short hours later... if she hadn't been in the nursery, who knows what would have happened?  She might have struggled to breathe while she was in the room with us, and if we had been sleeping, we might not have noticed.  It's possible that she might have then come home with us later the same day, and I can't even let myself think about what would have happened if she had.  A lot of times, HLHS babies go home undiagnosed and seemingly healthy, and then they get really sick really quickly shortly after they're home.

A quick physiology lesson for you all - in HLHS, it's pretty common that undiagnosed babies appear healthy right after they're born and don't exhibit symptoms until 3-8 days after birth.  The reason they stay healthy-looking for several days sometimes is that all babies are born with an open PDA in their heart, and the PDA typically closes 3-8 days after birth.  If you want more details on the PDA, you can click here.  But for the sake of this blog entry (that is already long enough), all you need to know is that while the PDA is still open, HLHS babies' hearts function somewhat normally so they appear healthy.  Once it closes, HLHS babies often go into shock as the blood flow in their bodies is suddenly disrupted and since they don't have a functioning left ventricle, this is very, very bad news.  In healthy babies, once the PDA closes things are just fine, because the heart functions normally and doesn't need the PDA.

So, what we think happened was that Adelaide's PDA started to close while she was in the nursery, which would explain the symptoms she exhibited.  Luckily, because the doctor responded quickly, they were able to start her on an IV medicine (prostaglandin) that worked to keep her PDA open and therefore help her blood flow stay somewhat normal.  We are SO lucky that this was caught as early as it was, because Adelaide stayed surprisingly strong throughout her whole ordeal... had she gone home with us, she might have gone into shock and while there's a chance we would have been able to get her to a hospital in time had that happened, there's also a chance that things wouldn't have gone that way.  And because there's no need to even let my thoughts go down that path, that's all I'll say about that.

So anyway.  To sum up, there was absolutely no medical explanation for that pain in my leg - but there is definitely an explanation for it.  I strongly believe - with absolutely NO doubt - that God was (and still always, always is) watching out for Adelaide... and that He was making sure that we would not go home with our little girl.  Why else did I have that pain in my leg?  And why did I have it exactly when I did?  The timing of my leg pain, the ultrasound, and Adelaide's starting to exhibit symptoms... some might call it coincidence, but that's absolutely not the case.  I will reiterate that up until I went down for my ultrasound, the longest Adelaide had been out of our room was 10 minutes.  Up until I went down for my ultrasound, she seemed 100% healthy and we had absolutely no idea what was going on.  Had I not gone down for my ultrasound, there is a very good chance that we would have been discharged 12 hours later and taken Adelaide home, completely unaware that she had a life-threatening heart defect.  And things might have looked very, very different for us.

As Adelaide's story progresses, there are several other instances of things that happened beyond any reasonable explanation - beyond any possible coincidence... things that have made me believe with absolute certainty that there are hands guiding my little girl through life, and they aren't of this earth.  I'm not trying to "push religion" on anyone who is reading this - we all believe what we believe, and the purpose of this blog isn't to start a debate on whether or not what I'm saying is true/logical/in agreement with what others might think.  But whether or not you're religious, it's hard to deny that there is a greater purpose - more going on with what happened to Adelaide - than I can wrap my head around.  And hopefully as I continue with this blog, I might start to better understand that.

So, for now, I'm going to wrap up this entry and start working on the next.  Thanks for reading, and stay tuned...

Thursday, April 19, 2012

I'm a Bad Blogger

I've been horrible at blogging.  I've been super busy over the last several months, so I'm not beating myself up over the fact that my blog isn't up-to-date.  Yes, I was hoping to keep up with it in "real time" as a way to keep friends and family updated on what was going on with Adelaide, as an outlet for stress/venting, and as a record of what we've gone through as a family.  However, in the grand scheme of things, there's been so much going on that blogging just hasn't been a priority.

That said, I've been keeping notes/Word documents here & there with every intention of updating this blog, but I am (obviously) WAY behind.  So what I'm hoping to do within the next few weeks is post entries from last fall that take us through Adelaide's journey - from her original diagnosis to her heart transplant, from our time at Kohl's house to where we are now - home, happy, and thriving!  Thanks for your patience as I update things over the next few weeks.  Once I'm up to date on where we've been, I hope to continue blogging about where we are and what we're up to now!

I'll keep you posted...

Sunday, January 8, 2012

Adelaide's Birth Story

Adelaide's due date was Saturday, September 3, 2011.  A few weeks prior, at my 38 week appointment, my blood pressure was borderline high - and then at my 39 week appointment, it was officially high.  The OB sent me to the hospital to be monitored, and at the end of the hour & a half that I was there, my blood pressure was back to normal.  However, they recommended that I take it easy until the baby was born.

At my next appointment on September 6, 3 days past my due date, my blood pressure was borderline high again.  My OB recommended that I go in to be induced, since the baby was now officially late and they were concerned about my blood pressure.  So, at 7pm that night, Brian and I checked into the hospital and I began the induction process.  Our Adelaide was officially on her way (even though at that point we didn't know she was an Adelaide, as we hadn't found out if we were having a boy or a girl ahead of time)!

By 8:30pm that night, I was on Cervadil, which is a drug that is supposed to prepare the cervix for labor.  Sometimes Cervadil can start labor on its own, but in my case, it didn't.  At 9:00am the next morning, I was started on Pitocin, which is a drug that induces contractions.  I was on Pitocin for about 10 hours, had some regular contractions (but nothing too bad or painful yet) and made a bit of progress - enough that my OB suggested we stop the Pitocin overnight and start it again the next morning.  He said he felt that doing this would give us a good chance that I would go into labor and be able to deliver the baby vaginally the next day. So, I was taken off the Pitocin and allowed to eat dinner, and then I got a bit of sleep that night.

The next morning, I was put on Pitocin again and contractions started up again.  At around 9:30am, the doctor came in and checked my progress, and he then broke my water to try to speed things up.  The nurse warned me at that point that breaking the water usually makes contractions more intense - and she was NOT kidding!  Within an hour the contractions were extremely painful and I was ready for an epidural.  I had previously been hoping to deliver without pain meds, but after being on and off and back on Pitocin and having my water broken, I was tired - and in pain - and ready for the epidural.  So the anesthesiologist came in and put in the epidural, and within about 30 minutes I was feeling much better.  Thankfully the epidural went in with no complications and I was able to actually get some sleep during even the most intense contractions (according to the monitor, that is - I felt next to nothing!).

Throughout the day, the OB came in and checked my progress.  By 2:30pm, I was only at about 2 centimeters dilated and 75% effaced (for comparison, I was 1 cm dilated and 50% effaced before I got to the hospital), and the baby was still at station negative 3 - meaning she was still not at all low enough.  My OB said that he would come back and check in about 2 hours to see if I was any more dilated and if the baby had descended any more; and if not, he said we should prepare for a C-section.  Because I had already been going through the induction process for over 24 hours at that point, and because he had broken my water that morning, he said it was important that I deliver that day - and if the baby wasn't ready to come vaginally, that meant a C-section.  

However, when he came in at 4:30pm, I had dilated to 5 centimeters!  Though the baby was still really high, he said he would give it another 2 hours and check again at that point.  However, at 6:30pm when he checked, I was still at 5 centimeters and the baby hadn't budged.  So, the decision was made to do the C-section.

Everything with the surgery went really quickly.  An anesthesiologist came in to up the dose of my epidural, and I basically went numb from the chest down for the surgery.  I could still feel and move my arms, but below that I had no idea what was going on.  At one point before they started the surgery, the doctor lightly tickled my stomach with something and asked if I could feel it, and I told him I could feel the tickle.  He then told me that he wasn't actually "lightly tickling" me - rather, he was pinching my stomach pretty hard with forceps!  So, based on that they knew I was ready for the surgery to start.

Brian was allowed to sit next to me during the C-section, and the two of us talked to the doctors as they were doing the surgery.  It went fairly quickly - I want to say I was in the operating room by 7:00pm and Adelaide was born at exactly 7:25pm.  When she was almost out, Dr. Torres told Brian, "Stand up and take a look, Dad - tell mom if you have a boy or a girl!"  So Brian stood up and looked and then immediately sat back down... he looked at me and said, "I looked too soon - I've seen things I can't un-see."  haha...  Anyway, Dr. Torres laughed and apologized and a minute later said, "Okay dad, now we're ready - look at your baby!"  Brian stood up again and looked and then he said, "It's a... a girl?"  Apparently he couldn't tell right away!  But Dr. Torres nodded at Brian and mouthed, "Yup," and at that point Brian looked at me and said, "We have our Adelaide."  Cue the waterworks from me - I started bawling and was just SO relieved that she was finally here.

I didn't get to hold her immediately, because the NICU had to check her out - because when Dr. Torres broke my water, there was meconium in the amniotic fluid.  Thankfully, everything was fine and a few minutes later, I got to hold Adelaide for the first time.  After a few minutes of cuddling her and just being in awe that I was actually holding my baby (it was so surreal), Brian went with Adelaide and the nurse to the recovery area while the doctor finished with me.

Once I was done, I was able to join Brian & Adelaide in the recovery area.  We took a few pictures, I was able to breastfeed Adelaide for the first time, and then once I was feeling less groggy, we went up to my room.  An hour or so later, my family came to visit and we all spent the evening cuddling Adelaide and swooning over how cute and perfect she was!  Overall, it was a crazy 48 hour induction process, but she was worth every second of it.