Thoughts
Congenital Heart Defects (CHD) Awareness Week
Our Madeline was born with severe congenital heart defects (CHDs): Total Anomalous Pulmonary Venous Return (TAPVR), and Hypoplastic Left Heart Syndrome (HLHS). You can read about this amazingly strong little girl and her story here.
This week is CHD Awareness Week and all of February is Heart Awareness Month. The CHD Awareness website provides more information about how you can help the cause.
This issue continues to touch us personally and deeply. Maddie is not out of the woods, nor will she ever be. She is scheduled for more intensive cardiology testing at the end of this month and late March, in fact (more details in a later post). We will always be coping with her CHDs.
Maddie is a fighter. She is strong and stubborn. It’s what keeps her going when she should be down. But even with that same fighting spirit, some children don’t make it. Some are taken from this earth because of CHDs and we’re left to grieve the loss.
That’s what happened last week to someone I know personally. Her precious son lived for 4 days and then passed away quietly in her arms after suffering from heart failure. I wept for her and her pain. She is not alone in her anguish. Thousands of mothers every year are mourning the loss of their little heart babies and children, too.
So, it’s with this sweet boy in mind that I share these statistics in the hopes that it could save the life of at least one baby out there. Please read and spread the word.
Facts about CHDs as noted by Little Hearts, Inc.:
- Congenital heart defects (CHDs) occur when a baby’s heart fails to form properly during early pregnancy. In most cases, the cause is unknown, although scientists feel both genetic and environmental factors play a role.
- Some environmental factors that increase the risk of CHDs include the mother’s use of cocaine, alcohol or certain medications while pregnant. Some maternal medical conditions – such as diabetes – may also increase risk.
- CHDs are the most common birth defect – and the leading cause of birth defect-related deaths.
- CHDs occur more often than Spina Bifida, Down Syndrome or hearing loss – and kill twice as many children as childhood cancer.
- It is estimated that 40,000 babies with CHDs are born in the United States each year – that’s one in every 125 babies.
- Although some babies will be diagnosed at birth, newborns are not routinely screened for CHDs – and pregnant women are not routinely tested for CHDs.
- There are approximately 35 different types of congenital heart defects.
- Some CHDs may be treated with surgery, medicine and/or devices, such as artificial valves and pacemakers. In the last 25 years, advances in the treatment of heart defects have enabled half a million U.S. children with serious CHDs to survive into adulthood.
- Many cases of sudden cardiac death in young athletes are caused by undiagnosed CHDs and childhood-onset heart disease.
- Early detection is critical to the successful treatment of CHDs. Some heart defects can be detected by a routine ultrasound – but the most effective prenatal test is an echocardiogram performed by a Pediatric Cardiologist.
The .26 Hearing: Terminating Parental Rights
I’ve been sparse with the details of Jake and Joey’s foster-to-adopt tale. Mostly, it’s because we haven’t always known what was going to happen, or it took so long for anything to happen. Also, we’re required to maintain confidentiality about many aspects of the case. But it’s time to share the latest news.
Fostering is a messy and complicated legal process, especially if you are hoping to adopt the child or children in your care. There is a flowchart that attempts to explain the events in a more manageable way, but it’s still pretty convoluted and the truth is it doesn’t always happen as smoothly or as timely as the arrows indicate.
In California, the first step in starting the actual adoption process is the .26 Hearing, or Termination of Parental Rights. By this point, the Detention Hearing, Jurisdiction Hearing, and Disposition Hearing have all been held and biological parents have proven to the court to be unable to reunify with their child. The judge then determines that the parents’ rights should be terminated and the child will become free for adoption, after a 60 day waiting period allowing them the chance to appeal based on legal grounds. After the 60 days pass, the court issues “freeing documents” and the child becomes eligible for adoption. (This site on Q&A: Juvenile Dependency Court sums up these proceedings very nicely, if you’re interested in more information.)
On December 7, 2011 (exactly one year to the day that these incredible boys entered our lives) Jake and Joey’s .26 Hearing was held and the judge ruled to terminate the rights of their biological parents. Again, as grateful and relieved as I am to know this ruling, it makes me sad for these two people who are missing out on these precious, precious boys. Fostering-to-adopt is nothing if not complex.
But for our family, this news is long-awaited and joyous. We have just reached the end of this 60 day waiting period and now Jake and Joe will be free for adoption. We have been working furiously to complete the adoptive home study (post on the details of that to follow) and are now waiting for the various social service agents and offices to complete their portions. We think their adoption could be finalized by the middle of next month. We can hardly wait.
You may be wondering if we or the boys are required to attend any of these hearings. The answer, thankfully, is no. We could if we wanted to, but I can’t think of a single reason that I would want to be at court. Imagining the proceedings can be hard enough to handle without witnessing them in person.
We are so very grateful to be at this point! It has gone faster than we thought, but the months of not knowing if it would end in our favor were difficult. It’s a combination of feeling like time has stopped completely with no progress being made and then looking back to see that it was all over in the blink of an eye. I suppose that’s how most trying experiences feel.
Thank you all for your prayers and good thoughts in helping us through this experience. We couldn’t have made it without you.
We look forward to showing you their cute faces on this blog soon!
Parenting 505
Maddie has always been a challenge, for various reasons. Year Two of her life proved that time and again, and Year Three is shaping up to be no exception. As with all toddlers, she is a walking contradiction where screaming to let her do something herself is followed by, “Can you help me?” in the same breath. She is stubborn, and sneaky, and so often has the appearance of looking for mischief.
So it’s no surprise that we often butt heads. The year that has passed since the babies joined our family has been rough on my relationship with this spunky, spit-fire little girl. (Adding new members to your family is a huge adjustment anytime, but adding multiple babies when you’ve just turned two is a doozie.) She’s always loved the boys and hasn’t expressed much overt jealousy, but just her stage of development alone makes it difficult for her to be gentle with them at all times, or to be more help than hindrance when I’m trying to take care of their needs. It’s gotten better as she’s gotten older, but it’s still a struggle sometimes.
And I must admit, for too long I’ve been less than patient with her antics. On some days, I’ve been downright mean in my frustration.
When I heard this General Conference talk last spring, I felt the message speak directly to me.
One part, in particular, stood out to me as something I needed to address in my parenting attitude:
A sweet and obedient child will enroll a father or mother only in Parenting 101. If you are blessed with a child who tests your patience to the nth degree, you will be enrolled in Parenting 505. Rather than wonder what you might have done wrong in the premortal life to be so deserving, you might consider the more challenging child a blessing and opportunity to become more godlike yourself. With which child will your patience, long-suffering, and other Christlike virtues most likely be tested, developed, and refined? Could it be possible that you need this child as much as this child needs you?
(“What Manner of Men and Women Ought Ye to Be?” Elder Lynn G. Robbins, The Ensign, May 2o11.)
Of course! Maddie is my most challenging child (at least at this time) and so I’ve been fixating on her negatives more than her positives for so long that sometimes it’s been difficult to appreciate the blessing she is in my life. I needed to change myself, not her, in order to find peace in our relationship.
How was I going to get there, I didn’t know. I felt like it was getting worse despite being made aware. But with daily prayers pleading for forgiveness, renewed humility, and a desire to be more of an example of Christ, I decided I’d better figure out a way.
And then one late night talking to Christy during her visit here changed my perspective, hopefully permanently. Maddie’s actions were out of my control, but my own reactions, responses, and choices were mine to choose. Did I have to be angry that she kicked Joey and then kicked me when I put her in her room for time out? No. I could choose to be calm and place her gently on the floor instead of heaving her in and snapping, “NO!” at her through clenched teeth.
So here is my revolutionary plan for parenting: be nice. That’s it.
When I want to yell at her to stop, I use a soft voice to give her the options instead. When I want to throw her on her bed and slam the door, I quietly walk her to her room and ask her to come out when she’s ready to be kind. I hug her more, even when I don’t like the choice she’s made. And when I can’t find a way to feel kind, I take a deep breath and walk away myself. Sometimes I’m the one who needs the time out.
It’s worked. She’s still feisty. She still pushes the limits and many, many buttons, but I feel a whole lot calmer. It’s been months since I made this decision and it’s only gotten better.
I love this girl in an extraordinary way. I’m grateful I get to be her mother. I’m hoping that (besides getting the worst of it out before her teenage years) these stubborn, tough, independent aspects of her personality can be channeled for good. I hope that I have the wisdom and self-discipline necessary to help her get there.
Mr. Mom
I love my husband. I know I’ve said that before, but it’s worth saying a thousand times over. He is a remarkable companion and a remarkable dad.
Colin has been home doing my job for the last 4 weeks, only it’s much harder because he’s flying solo. I can’t really do much of anything to help. He’s there, everyday, in the trenches working hard to care for the kids and for me.
As any stay-at-home parent could tell you, the job is rigorous. It’s exhausting and physically intense, especially when you have three in diapers. It’s managing schedules, and cleaning, and preparing food, and endless driving, and resisting the monotony, and thinking beyond yourself. But Colin stepped right in and took it all up like he’s not used to sitting in front of a computer for 8 hours a day. And he did it almost without complaint. Almost.
He’s also found the joyful aspect of the job, too. The funny, creative, rough and tumble, curious, adventurous, nurturing side of the everyday tasks, as well. He’s playful with the kids and finds ways to make them laugh. He gets in there and colors with them. He let’s them climb all over him. Not that he didn’t do all these things before. It’s just now he gets to do it all day long. It’s been good for me to observe, reminding me to find balance throughout the day. Sometimes I let the aforementioned chores bog me down. I appreciate his approach.
But let’s not be fooled by the title of this post. This is a dad we’re talking about. Let’s put the manliness back in the role with some stats from the last few weeks:
- 11 poopy diapers changed in one day
- 1 kid out of diapers (Possibly, maybe for good? Post to follow.)
- 9 wrestling matches of 4 on 1
- 8 trips to Costco with all four kids
- 15 school lunches prepared (always the worst part of my day)
- 3 times starting the day with all children awake before 6:15AM
- 100 times feeding twins by himself (3 meals and 2 snacks a day)
I’m going to be sad to see him go back to the office at the end of my recovery. Not just because I’ve appreciated all his hard work (which I have immensely) and will be longing for his daily help (which I definitely will), but because I will just plain miss having him around.
Post-Op Notes
- Prior to surgery, I was told I wouldn’t be able to lift anything over 20 pounds for the entire 6 weeks. That was every one of my four children. What was I going to do? Colin starting saving vacation days as soon as we thought surgery might be a possibility. He saved so much that he is able to be home for the majority of my recovery. What an incredible blessing.
- Jared and Laura volunteered (how amazing are they??) to come all the way out from Boston and help for the first week and a half. We could not have survived without them. They did everything and were so gracious. Plus our kids got some cousin time, which was invaluable.
- It has been ridiculously hard to just sit and watch life roll by. The chaos of my household wails on while my butt is planted on our comfortable but ugly couch. I know it’s what I need to do to heal, but that doesn’t make it any easier. But I’ve read a few really good books and caught up on this blog, so I guess there’s something to be said for being relieved of everyday duties.
- Not being able to hold my kids is just sad. Maddie asks me everyday if I’m all better yet. I try to hold them in an awkward lean, their feet on the cushion next to me as their arms wrap around my neck. I miss snuggling them on my lap.
- Friends from church stepped in and have provided huge support. Dinners, rides for Warren to and from school, picking up Maddie for a fun outing during the day, letting Warren come over to play for a few hours…. the list of people and the service rendered is too long to name here. I am overwhelmed with gratitude. A special thanks to Lyndsi for arranging most of it.
- I’m so grateful for family and friends who have expressed their love and well-wishes over the past few weeks. Their support has really strengthened me. I haven’t had too many moments of feeling down, but when they’ve come I’ve leaned on these people that I know care deeply. It’s meant the world.
Endometriosis, Ovarian Cysts, and Other Fun Adventures in Gynecology
{Warning: this is a post that may make some (i.e. male readers) feel a bit uncomfortable. I try not to give too much information, but if talk of “woman times” or “lady parts” scares you at all, you may want to skip this one.}
When I was 21 years old, I stood in the parking lot of a movie theater and cried in a huddle with my two best girl friends from high school. I had just learned that I had endometriosis. For those of you not familiar with this lovely disease, it means the endometrial tissue from the uterus (similar to what is normally shed through menstruation) spreads through the pelvic cavity and attaches itself to various parts of the body. Though the affects of the disease vary from woman to woman, I was told to expect complications in becoming pregnant and possible infertility. Coupled with the excruciating pain of my first ovarian cyst (which led to the discovery of this diagnosis), it was a tough blow.
After a few months of processing and grieving, I went forward with the knowledge that my road to motherhood would be unpredictable, as would my experience with pain.
Fast forward 15 years later. Indeed, I found that I was infertile, though it hadn’t stopped me from becoming a mother to four beautiful children thanks to the blessings of adoption. After 8 years of marriage, we actually did see a specialist who confirmed that it would take a miracle (even with $20,000 a pop in vitro fertilization) to make infertility treatments work so we said no thank you. He also told me that, at my age, my eggs were old anyway, but I digress. Despite this, one of the sweetest memories of that consultation visit was my little Warren asking if the doctor had fixed me so that I could have babies. Life’s mysteries too hard for a toddler (and sometimes adults) to grasp. But I was at peace knowing that I would never get pregnant.
Ultimately, it wasn’t the infertility that was the most problematic part of this disease. It was the pain.
Last November, I started really hurting. After all these years of riding the roller coaster of pain, sometimes tolerable, sometimes debilitating, I was used to discomfort. But these recent experiences told me I was beyond the typical aggravated cramping associated with gnarly endometriosis periods. I was in full-blown pain. It was so severe that, when it came, I couldn’t even continue the task I was on but had to double over and wait for the sharp, stabbing sensation to go away. Worst of all, it was sporadic so I never knew when it was going to hit. Something bad was going on. And I hated the idea of dealing with it.
But I was good and went in to visit my specialist gynecologist only after a couple of months of this– better than my usual track record. After some testing, which included an ultrasound requiring a completely and painfully full bladder (I wasn’t sure if I would make it to the exam room without wetting the waiting room carpet, it was so horrible), the results indicated that I had another endometrioma (ovarian cyst) on my right ovary. The trouble was the excruciating pain was on my left side.
That meant the endometrial tissue had most likely attached itself to other unsavory parts, probably my intestines. Time to form a plan of action.
Dr. “Old Eggs” and I had history and I trusted his straightforward, if blunt, recommendations. He laid it out this way. I had two options: 1) continual birth control for years and years (most likely until menopause) to suppress my period, reducing symptoms and possibly shrinking the cyst, or 2) a hysterectomy. His reasoning was that just removing the cyst was like slapping a band-aid on the problem. I would only grow more cysts. Taking the hormones would be the first and least invasive step we should take. Undergoing a hysterectomy would be the last resort, but what I would eventually have to face.
I agreed, even though my past experiences with birth control left me feeling like a witch on her broom at best thanks to the highs and lows of increased estrogen. What did I have to lose?
I tried this for 8 months. It helped alright. The pain was less intense and less frequent, but it was still there. I still felt the impact on my life. Like wanting to accomplish things but never really feeling good enough to try. I felt like I was just limping along each day. It’s hardly the way you want to live, especially with four small children.
Finally, after much research and fasting and prayer, I decided that I didn’t want to put off the inevitable any longer. I decided to have the hysterectomy. It wouldn’t necessarily cure the problem, but it would help more than any option I had.
On January 3rd, I checked into the hospital at 5AM and underwent the 2 hour surgery. I’m 4 weeks into my 6 week recovery and doing fine. It’s still painful to sneeze and I don’t move around very well yet, but each day is better. I can’t lift anything over 20 lbs. for the entire recovery, so that’s made accepting help from others absolutely necessary. It’s been humbling all around.
There were moments before my surgery when I would freak out wondering how my body would react. Would it end my pain? Would he need to remove both ovaries? Would I need hormone replacement therapy? Would taking that put me back on my broom? But I had to remember that I had received a comforting answer through prayer. It would be alright. I had to trust in that and go forward.
He did remove both my ovaries after all. It was a game-day decision that became obvious was necessary after finding that both of them were covered in cysts and tissue, not to mention the muscles of my uterus were also lined with the stuff. The part that touches my bladder and colon were also affected. “No wonder you’re in pain,” confirmed Dr. “Old Eggs” who was also the surgeon. It was a relief to get it out.
So far, so good on the progesterone replacement. No hot flashes, like he expected. I feel good, overall. Now I just need to get over this surgery pain.
What a journey. I’m glad it’s over, or at least so it appears at this point. It’s certainly not the road I ever thought I’d be on, but it’s been enlightening, nonetheless. I feel blessed for the guidance I received in making this decision. And I’m grateful for modern medicine that can alleviate my pain.
Spending Fast: February 2012
You may remember me mentioning my friend, Cami, and her amazing thrifty and frugal ways. Every year (for the past 3) she’s committed herself to a spending fast challenge for one month out of the year. And every year I say, “Wow, you’re awesome! Good for you! I’ll be rooting for you!” without ever accepting her invitation to join in.
This is the year that I am going to give it a go. I don’t shop excessively, but I know I can improve in many ways. This is just the challenge that I need.
Here are her rules for the month:
“You don’t buy anything for the month of February. Okay, there are a few exceptions. You can pay your rent and other bills and you can buy gas. You can also buy food, but you should limit and stretch in this area. For my family of three I spend $50 a week during the Spending Fast. You can choose what works for your family. Also, no eating out.”
Doable? I think so! *gulp*
She’s also planned a giveaway this year, as incentive for participating. She makes some pretty fantastic stuff, so I would definitely leave a comment on her blog, if you’re interested in joining in on the frugal fun.
Alright, who’s up for the challenge? Leave a comment and let me know if you’re in!
The Coat
Back in December, we came across this video on the church website. It’s a beautiful, wordless cartoon depiction of an act of charity, taken from the life of the prophet Heber J. Grant. Maddie cannot get enough of watching it:
She asks to see it often. As soon as we pull it up she shouts, “Big one! Big one! Full screen!” because the default small version just isn’t enough for her.
Even though we’ve seen at least 20 times, I still tear up at the end.
Soccer Parties and High Fevers
The end of the soccer season meant time for an award ceremony and pizza party. I was responsible for bringing the cupcakes and Colin, being the coach, was responsible for handing out the trophies and certificates.
We had just returned home from an overnight temple trip. Maddie had woken us up in the middle of the night with an almost fever. Colin had to go driving around Westwood for an open pharmacy to get Tylenol. Of course we hadn’t brought any. By the time we reached our house late Saturday morning, she was going downhill fast.
Our options did not look good. Maddie was clearly sick and would most likely need to go to the ER to monitor her fever and yet we had this soccer party obligation. I was frosting cupcakes while she appeared to be getting worse. Colin was printing out award certificates while she was passed out on the couch. It was one of those situations where we wondered what the heck we were doing.
It was ridiculous. I hated knowing that we both had to do this party even though we weren’t sure how Maddie’s sickness would play out. It’s not like we could even split the duties since we only have one car. Either we were both going to the pizza joint or we both weren’t. It felt like a hopeless situation.
We went forward with our plans, praying that she’d get better and that her fever would break completely. We went to the party, ate our pizza, clapped for the soccer players, finished our cupcakes, and headed home.
{Warren received the “Bulldozer Award,” so dubbed for his ability to plow through many players and still keep going. He had a better season than last. All the same, it was good that it came to an end.}
{My green grass frosting and soccer ball cupcake toppers were well received, even though I learned too late that putting the finished product in the cupcake carrier smashes the topper down into the frosting. Note to self: place the topper in the cupcake after transport.}
She was doing alright but we wondered what would come. When we got home, we called our Home Teacher and asked that he’d stop by and help give Maddie a blessing of healing. Then we waited to see what would happen that night. We did not want to subject her to the emergency room testing procedures if we could help it.
We never had to take her to the hospital. She slept peacefully through the night. By morning, her fever had broken and she was feeling better. A call to her pediatrician the next day provided the antibiotics she needed to fully recover. I am so grateful for modern medicine and Priesthood blessings. She was spared the trauma of the emergency room testing, at least this time. I’ll take miracles whenever I can get them.
How the Marathon Passed Me By
Ten months ago I set the goal to run the Santa Barbara Marathon. That’s 26.2 miles, folks, that I was hoping to conquer. Those of you who know me and my history with the sport know it’s quite the leap from my last race completion. But running this distance became a “bucket list” item that I dreamed of completing, just because it is so difficult. I could have set my sights on the half marathon, to start, but why not just go for it, right?
A national organization dedicated to fundraising for the Leukemia & Lymphoma Society called Team in Training caught my attention last spring, thanks to another parent in Warren’s kindergarten class, and inspired me to persue my goal. They train you completely and you collect donations for cancer research. It’s win-win in my book.
The Santa Barbara Marathon is perfect because not only do I live here, making it pretty easy to show up, but it’s also held on Saturday, unlike so many others which would require me to break the Sabbath to enter.
I was excited at the prospect of obtaining a goal that, 2 years ago even, I would have never had the guts to set. I told friends and family that I was going to do it. Everyone encouraged me and I felt like it was something within my grasp.
The race was yesterday and I did not run.
I didn’t even train. Because of some serious health issues (explanatory post to follow), I never felt up to running or really any exercise at all. For the last 7 months I have watched the calendar flip forward knowing that I would not be able to do what I said I was going to do.
And that’s the worst part. If I had never even mentioned it to anyone, I may have let it go and not felt like such a failure. But since I opened my mouth and told the world my plans, I felt like the girl who is all talk and no action. The one who says she’s going to do something and then just doesn’t.
That’s what I felt this past week each time I drove by the road signs reminding the community of the upcoming event. Just a big orange sign screaming at me that I did not complete what I said I’d do.
In the end I know it’s not my fault. I know I’m being a bit harsh. My health has taken the goal right out of my hands, at least for the time being. I have to keep reminding myself that it’s just my life circumstances at this moment. Hopefully, it won’t be forever. I want to believe I’ll try for it another time.
I had several friends that ran the marathon and half marathon yesterday, some for the first time. I thought about them many times throughout the morning, wondering how they were feeling and hoping they were completing the race they way they had planned. They all finished, and I couldn’t be happier for each one.
Way to go Rebecca, Esther, Nicole, Annie, and Cherry!! I wish I could have ran there with you. (Well, behind you, really, because I would have never been able to keep your pace!) But I was with you in spirit, I promise.
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