Words You Love to Hear…

…from your 8-day old baby’s cardiovascular  surgeon:  everything went perfectly.

The doctors were able to do a complete fix of the transposition.  He is in the ICU recovering and so far doing well.  He’s still intubated and covered in a myriad of other tubes and monitor stickers (LG and I tried to count the lines going into him, but lost count), but he’s holding his own.  We’re so grateful to the doctors and most of all the amazing nurses at Children’s.  He’s still considered critical for the next 24 hours or so, but we’re definitely seeing the light at the end of the proverbial tunnel and can’t wait to take our healthy little boy home.

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Off One Rollercoaster…On to Another

Despite my infrequent postings, some of you have continued to show your support, which is so amazing to me.  Thank you for that.

On to the news…our son was born on March 3 at 2:19 am.  He was 6 lbs 2 oz, but we didn’t get a length as immediate medical intervention was required for him, but I’m getting ahead of myself…

I’ll try to come back and post the birth story later, but here’s the quick version:

  • Induced due to low amniotic fluid
  • Fetal distress with contractions at only 5 centimeters
  • Rushed into a surgery at 1am in the morning – baby out quickly and safely
  • Found a suspicious lesion on my remaining ovary after removing the baby
  • Kept me open on the table for nearly 2 hours waiting for a pathology consult who never came because apparently they don’t work at night
  • Took a biopsy to send for a full workup and finally closed me up.
  • Learned 2 days later with great relief that the growth was benign

Now, onto the story of the Boy (still coming up with an alias for him).  Because of his heart condition, the NICU resuscitation team was on hand for the delivery.  They immediately took him to another room when he was delivered – neither LG nor myself got to see him.  They worked him up in the NICU of the hospital where I delivered, and initially he seemed very stable.  They were going to bring him to see me before he transferred to Children’s, but once they gave him the drug to keep his patent ductus open to allow for mixing of the blood, he stopped breathing.  They were able to quickly stabilize but felt they needed to transfer right away, so as a result I didn’t get to see him before he and my husband rushed across town in an ambulance.

When he got to the Children’s NICU, he had stabilized and his oxygen saturations and blood gases were quite good.  They did a detailed echocardiogram and to our great relief they did not find any other cardiac or lung issues beyond the transposition and the VSD’s we already knew about.

I finally got out of the hospital on Saturday (3.5 days after his birth) and went straight to the hospital to see him.  What a little peanut. At that point, he definitely had his share of tubes, which was an initial shock, but little did I know…  He did great for a couple of days and then on Saturday night, he started to go downhill.  They decided to do a catheterization procedure in which they go up through a vessel in his groin to his heart and they create another hold between the atria to create another path for blood to mix.  As a result, he was put on a breathing tube.  From there, things got kind of screwy in terms of other systems and it was a rough day or so.  The tubes multiplied before our eyes until it got to the point where we could barely see our son.  The only place we could touch was his feet – and only those because they couldn’t get any tubes into them because he was retaining so much water.  We got him baptized on Monday, which brought us a sense of peace.  By Tuesday, things had steadied again and they took his tube out and he finally opened his eyes for a bit!

His surgery was scheduled for today, but late last night, a heart became available for a child in need of a transplant so that procedure took priority and bumped our little guy off the schedule.  We were certainly disappointed as it had been an emotional day preparing for the surgery, but in the grand scheme of things we realized the bigger picture – that while were disappointed and definitely want our son to get surgery before there’s a chance his condition could worsen, that another family’s world came crashing down around them last night at the loss of their child and the family of the child receiving the heart was receiving an incredible gift of hope.

We’re headed over the hospital in a bit to see our Boy, but wanted to capture to try to capture these early moments here.

Penetrating the Armor

I haven’t had much to say as of late although I still follow all my favorite blogs as well as a whole new batch focused on kids with Congenital Heart Defects.   N0w, though, I find myself starting to bubble over so I thought I’d head back to the tried and true outlet of writing about it.

We’re 7.5 weeks away from Wal.nug’s scheduled arrival (and yes, at this point, that half makes a difference).  Physically I really can’t complain.  I have the typical discomforts with respect to sleeping, heartburn, back pain, etc., but nothing that’s unmanageable.  I started weekly non-stress tests at 29 weeks, so I get a weekly reassurance that Wal.nug’s doing just fine in there, which is nice with everything else being so uncertain.  It’s that uncertainty about what comes after the little one is born that is starting to take its toll.

LG has struggled and worried essentially since we got the diagnosis*.  He worries that our baby won’t make it through surgery or that the condition will end up being more complicated than what we’ve been told or that the child will have on-going health issues that will lead to a compromise in the quality of life.  He’s always wanted a boy, but now he’s saying he wants a girl because he thinks it would be too hard for a boy to be restricted from playing contact sports like football or hockey.  (That’s both heart-breaking to me in that it’s clear he’s really worried about the quality of our child’s life but also somehow funny since between the two of us and our epically non-athletic natures, this kid’s lucky to be able to walk without bumping into walls on regular basis much less play something like hockey or football.)

I’ve been the one with the stiff upper lip until the last week or so.

Through a wonderful organization we found on-line, I was matched with a mom whose daughter was diagnosed with the same conditions our child has at her 20-week ultrasound (just like us).  I’ve exchanged a few e-mails with this mother and she’s been incredibly generous with her time and story for which I’m hugely grateful.  Her story did trigger a great deal of emotion for me, however.  The most important thing is that her daughter who is now 3 is doing really well, which is fabulous, but her diagnosis ended up being more complicated than originally believed and she has had a really tough go of it and faces further invasive procedures to ensure her heart continues to function.  In many ways, reading her story was like a direct arrow to the protective shield I’ve built around myself.  Since the day we got the diagnosis, I’ve hung on to the fact that it was serious but very fixable – usually with a single operation and then the child goes on to live a normal life.  As I learn more and more, I’m finding that’s not always the case and that kids do have on-going issues and even require multiple surgical interventions.  (Now, that may be a bit of sampling error as we say in my business because it could be those who blog about and therefore whose stories are more available are those who have had a more involved course, but still – it’s getting harder to hold onto the “one surgery and done” mantra that’s been my talisman.)

Now that my shield has been penetrated, I find my worries really top of mind and constant tears just under the surface**.  It’s becoming harder for me to be the “strong one” yet expressing any of my fear, worries, or doubts makes things even tougher for LG.  We’re just ready for the next 7 weeks or so to go by so we can move on to at least having a better idea of what we’re dealing with and get out of the holding pattern we feel like we’ve been in for nearly a year – first when we were in the throes of infertility and now through a difficult pregnancy.  In the days to come, I’ll write about how I made a fool of myself at the newborn care class we took through our hospital and the family drama that’s ratcheting up around Wal.nug’s imminent debut.

* I think it’s finally safe to be more specific about the diagnosis.  Wal.nug has a condition called Transposition of the Great Arteries or TGA (also called Transposition of the Great Vessels) along with 2 significant Ventricular Septal Defects (VSD’s).  Essentially TGA means that the positions of the pulmonary artery and the aorta are switched meaning that rather than oxygen rich blood circulating from the lungs to the heart to the body, the oxygen rich blood in a closed circuit between the lungs and heart and the body never receives the oxygenated blood.  This condition is usually fatal within the first year unless treated typically via open heart surgery.  With Walnug, the surgeons will attempt to fix the VSD’s during the surgery as well which will likely take place when he or she is 5 to 6 days old.

** Could also be a function of raging pregnancy hormones…

Happy ICLW Week – May

I thought I’d provide a quick synopsis of where things stand to date for those stopping by the first time (I’m very happy you’re here and I’m excited to visit your place!), and then go back to regularly scheduled programming.

My husband (known here as LG) and I have been married a year and a half, and we’ve been trying to expand our family literally since our wedding night. It’s a first time marriage for both of us but it took us a long time to find each other, so we’re practically both in the eating-at-Denny’s-at-4:30-in-the-afternoon camp** when it comes to baby-making. I’m 37 and he’s 44.

We fast-tracked our first visit to the RE given our ages as well as my medical history which included the removal of one ovary/fallopian tube due to a Low Malignant Potential ovarian tumor. Given both of those factors, our doctor (whom I refer to here as Dr. Yacht in honor of the luxury boat my treatments are funding), suggested we go right to the big guns of IVF.

Our first was canceled before we even got going due to a sky high E2 level (no BCP can keep me down…power to the ovary!). The next – and the one after that – were both giant busts.  Our diagnosis is still – frustratingly – unexplained, although after 2 attempts that have produced over 40 eggs combined (from one ovary!) resulting in a paltry 7 embryos – none of which successfully implanted – Dr. Yacht is now leaning more and more towards poor egg quality as the culprit.  After a much needed break, we’re now about a week away from starting stims for our 3rd attempt.  This time I’m shaking things up and taking a leave of absence from work for the month of June, and I’ll be spending that time pursuing acupuncture and other integrative therapies.  I’m well aware that this is probably a paltry attempt to exert some “control” over the situation, but it helps to feel like we’re doing something different.  Plus, IF has been such an all around drag – the least I can get out of it is a nice long summer break from work!

I’m really looking forward to discovering new blogs this week. Finding this community has been a life saver.

**Even if I were a young sprightly thing, we would still probably hit the dinner spots early because I hate HATE waiting for a table.  Paragon of patience…not I.

Trading Places

Day 2 of the 2WW…so far so good.  The fact that I’ve taken this whole week off of work has really helped keep my stress levels down, and I feel like I’m in a better place than I was at this point last time.  If all is going according to plan, my 3 little guys (which LG suggested we name B-17, B-24, and B-52…a suggestion which was summarily vetoed), should be blastocysts today. 

Since there’s little exciting to write about IVF-wise during this time, I thought I’d take a little detour and write a bit about some things I haven’t really touched on…aspects of my story both related (and not) to infertility.

As I’ve written about previously, my mom, sister, and I are all extremely close.  That doesn’t mean, though, that there isn’t a certain disequilibrium that I think comes into play in any parent/sibling relationship.  As a child, I was sick basically from the time I was 6 months old.  For at least a few heart-wrenching months due to a lab error, my parents thought I had cystic fibrosis.  Fortunately, that turned out to be a misdiagnosis; however, I was diagnosed with severe asthma and a whole host of environmental and food allergies.   Oh, and to top it all off – I had infant acne.  A real dream come true for my parents, I’m sure.  

As I grew older, the asthma played a very real and disruptive part in my life.  So many of my childhood memories involve the local Children’s Hospital.  Much of my mom’s time centered around shuttling me to doctor’s appointments, visiting me in the hospital, and basically just trying to keep me breathing.  As a result, my mom and I were incredibly close.   This left comparatively little time for my younger sister who remembers frequently being pawned off on neighbors during the middle of the night as my parents rushed me off of the hospital yet again.  It wasn’t until much much later that I realized the toll this took on my sister and how left out she felt.

All of that changed when my sister had her first child.  My niece, M, was born exactly 2 weeks to the day after my father died.  She came into the world with a job.  Basically, to breathe life back into our family –  a job which she pulled off like a champion.  She was and still is a true light in all of our lives.   From the moment of her birth on, my mother and sister shared something that I didn’t – they were both moms.  The first few years of M’s life, my sister lived about 30 minutes from my mom, and they spent a tremendous amount of time together.  I was far away in Denver living a completely different life.  They were never ever exclusionary, but I could tell without question that the dynamic had shifted.  That balance shift remains today.  My sister and mother talk every single day.  My mother is a constant presence in the lives of M and her younger brother, L.  They adore her and she them.  As LG and I started down the path of trying to start our family, I have dreamed of rekindling that kind of closeness with my mother.   Not that we’re not tight now…it’s just different.

The longer it takes us, the more I’m afraid that having my mom be the kind of grandmother to our children that she is to my niece and nephew just won’t be possible.  Yesterday, we spoke on the phone and she told me that her chronic back pain seems to be something more ominous – advanced degenerative disc disease.   I am worried for what that means for her — this is a woman who just last year booked herself on a 2-week walking tour of Switzerland — and selfishly, I’m worried about what that means for the children LG and I hope to have.  Will she be able to lift them and swing them around the way she does M and L?  Get down on the floor and play A.merican G.irl doll or trucks?  I know regardless of what happens, she will love them with all of her heart and be a great source of advice and support to us, but its just another reason that I hope it happens soon so they can know her as M and L know her – vibrant and active.

Internets, I Hardly Knew Ye

Looks like Patience Song will go down as the shortest blog in history.  Things have been quiet here on the blogging front the last several days, but definitely not in the Patience Song household.

LG has decided that he’s not comfortable with me putting this out there for all to see on the internet.  After much teeth gnashing (both of us) and tears (mine, all mine…it doesn’t help that these conversations are taking place when I have 2 weeks of Lupron under my belt and my tear ducts seem to stuck on the perma-water setting), I’ve decided that as much as I’ve come to be so invested in this community and loved having my little corner of it, I’m more invested in my husband and my marriage and feel like I have to respect his feelings.

As a result of this, the whole blogosphere has been pretty painful for me the last few days, so I’ve been a terrible ICLW participant.  My sincere apologies and thanks to all those who have commented on my blog – I have loved receiving your thoughts and words of encouragement, and feel badly that I haven’t been reciprocating.   I hope to catch up over the course of the week with my ICLW commenting.   I will also still keep up with the many adventures I already follow and hope to add more to my list as I discover new and wonderful blogs through cyclesistas and Stirrup Queen, and all of your blogrolls, so look for me in the comments section.

My very best wishes for all of you.