I recall all those Mother’s Days when we were trying to conceive and my heart, as full as it is with love for Bubble and Obi, still aches for those who try and try and still have empty arms. All those who’ve lost babies, sweet Olive, all the pain the hope of motherhood brings… I’m keenly aware today how lucky I am.
Someone I know has been ttc for a long time. She has risked her job, her health, everything to grow her family. Yesterday she learned her FET with her last frosties may be a chemical pregnancy. If you stop by and read this today, please please join me in urging the universe to let this one work out. Let it be the long shot that works out.
So next Mother’s Day, there’s one less woman with an ache in her heart.
Yesterday we met with the genetics clinic at our local children’s hospital. Seems wee Obi does indeed raise some flags for a genetic issue.
We’re wading into unknown territory here. At least for us. We’ve already done the blood draw for the micro array. They’ve also submitted for a more specific test. Their first suspicion is Russell-Silver Syndrome or some abnormality in the same family.
They also felt there might be a vision problem, which might be partially responsible for her delays.
When we got home from the appointment I did some digging online – I can’t really call it research as I didn’t take 10th grade biology let alone genetics and was completely overwhelmed by the science of it all. I did see that there are some references to people studying a connection between RSS and IVF specifically with ICSI. And another study showed a high incidence of eye trouble in babies with RSS – even though that’s the one thing the genetics Dr said was inconsistent with RSS.
All in all, it’s wait and see for now. They said to expect 3 months for results and even longer for referrals to ophthalmology and MRI. I fear hoping “it’s nothing” is no longer realistic.
But in terms of bad news, RSS isn’t the worst.
This certainly comes with a whole bundle of mixed up feelings, but whatever is revealed can’t be changed.
The life I imagined for Obi may not come to be just as I pictured, but that picture was never real.
This is her real path. It seems like it won’t be typical. But it will be our normal. And we’ll just have to figure out how to make it great.
Dealing with infertility, the IVF journey and pregnancy itself are all about waiting. At each stage, you think “Ok only, X more days (weeks, months) to wait”…and as soon as that time comes, there seems to just be more days to count, clocks to watch.
We have our appointment with the genetics people on the 24th and an echocardiogram scheduled next week for little Obi.
So we’re standing by for those.
I’m also still waiting for that first smile – sigh. But she does seem to be making eye contact (since March 29) and I believe has been following objects since the 6th of April- though not reliably. She will grasp something she grazes with her hand, like a bib, blankie or toy that is placed on her belly too, but that seems more like reflex than intention to me.
She does not turn to my voice yet. I think when she lights up a little upon my entering a room my days will be a little brighter.
I’m trying my best to live in the moment and not get too caught up in all the “what if’s”. Should we find answers, I will no longer be living in the bliss of ‘it’s probably nothing’ so I’m trying to let my mind hang out there.
Hopefully is it ACTUALLY nothing and all this is just over precaution.
Today, she’s just a baby being a baby – doing most of the things babies do.
And I don’t need to wait for someone to tell me she’s perfect. I can see that all on my own.
Nothing is easy.
So the pediatrician had also been wondering if she was seeing ‘something’ with Obi. When I told Hubs I thought there may be something up, he poo-poo’d me. But at the appointment when we were discussing the milestones she hasn’t hit (all of them) he mentioned that I thought she may have a chromosomal issue.
Apparently the doc had been wondering too. She pointed out the facial features she had been mentally keeping track of, unable to decide if it’s just how she looks or if they were soft markers. Add that to the tiny size both in utero, and now, some other issues related to feeding, sleeping, and her physicality and she has enough to be concerned.
We’ve now been officially referred to Genetics at Sick Kids. It may be nothing. But mothers intuition tells me it is not nothing. Something is up.
I didn’t want to be right about making a mountain out of her missing milestones. I wanted the doctor to tell me I was crazy. Though I knew, deep down, I was not.
Now the mountain has turned into Everest and I have no guide, not equipment, no sherpa to help bear the weight of this burden. Not even enough oxygen.
Could be nothing. But it’s going to be a long uphill climb to find out either way. If it is something, I have a whole lifetime of advocating, fiercely protecting, championing and reminding the world how perfect she is.
Today though, I’m very sad that she may not be the ‘perfect’ I wanted for her. Very sad indeed.
Off to the doc this AM for OB’s 3 month/2 month adjusted checkup. She’ll be 2 mo adjusted on Saturday and turned 3 mo last week.
So far, she’s tracking objects but isn’t doing any of the other things on the list for 8 weeks – not smiling, cooing or grabbing things. Getting a little nervous but hoping she’s just a little behind because she’s so, well…little.
I’ll report back after the appointment.
Wish us luck.
Where to begin? I’ve wanted to post about a thousand times over the last 6 weeks but haven’t been able to figure out how to put what I’m feeling into words.
First – having a preemie is much harder work than I had expected. It’s RSV season which means minimal contact with the world and the germs in it. So Obi and I are home. All the time. Feeding has been very challenging (see point two). Everyone I do come across tells me all the stories of all the babies they’ve ever heard of that have been born early and all of them are super rosy with happy ending with no talk of all the hard work and worry and setbacks and challenges which only serves to make me believe I’m the only one with an early baby who didn’t do ‘just perfectly from day one and is now fat as a pig’ or whatever term they use for every super fast growing happy fat preemie they’ve heard of. Thanks for that. Shut up now. Oh, and that whole “my c-section was a breeze – totally the way to go” thing is also a crock. I still can’t bump up against the kitchen counter or wear pants with a waist band without having shooting electric shock pain zipping from the area.
Second – she’s not thriving. The ongoing battle to increase her weight gain and maintain br.ea.stfeeding has been long, grueling and fruitless. She’s not gaining enough weight. I’ve been at the bre.as.tfeeding clinic twice a week for weight checks and more tips on how to bulk her up in addition to the 3 bottles of EBM + extra calories she gets each day. Today when I went, I was told what I’ve been dreading. We can’t wait for her to improve any longer. We need to increase the number of bottle feeds she gets a day. The more bottles she gets, the less interested she is in nursing. But her development is at risk if she doesn’t start gaining more weight faster. stat. I’ve done all I could. more than most would. but I need to accept that she needs to grow and if it comes from a bottle, it comes from a bottle. This is heartbreaking to me. Both because I really loved that bond with Bubble and because I feel like once again I’ve failed her. Oh, and it also makes me question if this is a sign of future delays not yet revealed.
Third – I still feel grossly inadequate because half the placenta died and she starved for 34 weeks. What kind of a mother only gives a kid half her food for 8.5 months.
Fourth – And while I’m whining, I’m supposed to feel lucky – I beat all kinds of odds to get pregnant, she beat all kinds of odds by surviving with only half her food (see above) but instead I feel tired, guilty, angry, anxious and sad. And before you say I might have post-partum depression, I looked up the signs and symptoms and I don’t think that’s it. I think things are actually tiring, upsetting, worrysome and not easy-go-lucky happy ending I was expecting.
Winning the lottery isn’t all it’s cracked up to be. Sometimes the prize, though wonderful (don’t get me wrong, love the baby to bits) brings a whole lot more than you bargained for.
NOTE: After writing this super downer post I got a call from the speech pathologist (who worked with her in the NICU to help improve her weak suck so she could take enough food by mouth to go home). As we were booking a followup for Friday and I explained my setback today she said “Thank goodness she can take a bottle. It’s far better than her having to go back in for an NG tube”. I had never even considered that as an option…so, for the silver lining HELLS YES, thank goodness she’ll take a bottle and we don’t have to readmit her for a feeding tube. Thank friggin’ goodness.
Obi. 6.5 lbs.