Seeking Balance

My babies are over six months old, and they are becoming more delightful every day. I’m not sure if all moms feel the way I have, but bonding with my girls has been gradual. I loved them from the moment I first laid eyes on them, of course, but the bonding process was not immediate. At this age, I know what makes them laugh and what makes them mad. I recognize when they are tired and when they need to be held. I know which toys they like, and I recognize their hunger cues. I comfort them and help them to feel more secure, and their eyes search for me when someone besides my husband holds them. Suffice it to say, I am enjoying them more and more as they grow more interactive.

Life seems like it is getting slightly more manageable. We still have clubfoot treatment in our future, but we are past the serial casting process and the tenotomy, so the frequency of those appointments has lessened. We still have Pamidronate infusions, but those occur only every eight weeks. We still have bi-weekly visits from a physical therapist, but those appointments are no big deal. Their next well visit with the pediatrician isn’t until 9 months. They are recovering nicely from their RSV. We will have OI clinic annually and will hopefully have no more broken bones in our future. We have babies sleeping 10-12 hours per night in their cribs and napping during the day. Life has gotten easier, and I am grateful.

Now I feel like it is time to re-focus on myself. Of all the members of this household over the past six months, I have been my own absolute last priority, and it shows. During my pregnancy, I gained 35 lbs. I can’t believe I didn’t gain more, as I was absolutely starving toward the end and ate tons of (junk) food, both to satisfy my hunger and to help with the morning sickness that lasted my entire pregnancy. I was so incredibly swollen afterwards from pregnancy and my other injuries and lack of activity, I had to take a presciption medicine to help flush me out. So in the two weeks after V&L were born, I lost 53 lbs. My body maintained that weight for about a month, despite me eating whatever I wanted, as it was working hard to recover from childbirth and my injuries. And then the weight started coming back on. Over the past five months, I’ve gained back about 20-25 lbs. I blame it on depression from all of the medical intervention needed for my girls their first three months of life, all of the pain they were in and the helplessness I felt, having to quit the job that gave me social interaction, and my own pain and inability to be active because of my injuries. In addition, I was feeling overwhelmed by life with twin infants. I comfort ate, and I don’t blame myself for it because I was at my breaking point. But it’s time to change.

So I have joined Weight Watchers Online, partly because my friend LisainSK has had a good experience with it. Hopefully I can achieve similar success. When all 53 lbs of that weight was gone right after childbirth, I felt fantastic. So that is my goal for now. I’m tracking the things I eat and trying to plan our meals around more fruits and vegetables. I can say it certainly hasn’t helped to spend all day at home, with my kitchen just a few feet away. And it hasn’t helped to enjoy a rum&diet or two with my hubby in the evenings out on our deck after our babies are asleep (2 oz of rum is 5 points!). But this change is needed for my mental and physical health. Moderation and exercise should help me to shed some pounds before the really sweltering summer weather gets here. I’ve been walking outside with the babies more often and increasing my mileage, and I will give myself an expectation of doing that every nice day this spring/summer.

A friend of mine, who is 31 years old (only one year older than me), suffered a severe stroke near her brainstem on March 11th followed by a series of smaller strokes. She is basically comatose, with a trach and a permanent feeding tube, lying in a hospital bed 20 miles away from me as I type this. She was thin and in good health, and basically the stroke was bad luck, but it is a definitely a wake-up call to me that I need to focus on my health. I want to be here as my daughters take their first steps, walk into their kindergarten classroom, move on to middle school and all educational institutions beyond, meet their first romantic love interests, and accomplish their goals. So I will be keeping that in mind as I start making myself a little more of a priority around here!

A Surreal Problem to Have

We are joining the bandwagon of trying to figure out what to do with our three frozen embryos. What an amazing problem to have–when we were awaiting our Day 5 report after retrieval, I thought it would be amazing if we only had one or two blasts. I never dreamed that 18 months later, we would have two babies and three frozen blasts in the freezer at CCRM. How fortunate we are! This week we received the notice from CCRM that we need to decide whether to pay for another year of storage, or somehow discard our embryos.

Even if I would want to try for a third baby someday, it is a really, really bad idea. After my accident last May, it became apparent that my body cannot make enough calcium to nurture a baby and keep my own bones strong. My joints also loosened and caused my kneecaps to dislocate. I also became very iron-deficient, which seemed like the very least of my problems at the time but could pose a danger to any future embryos in my body. We’ve determined that personally for us, we are not comfortable with the idea of someone else carrying our embryo for us. It’s just not for us. There is no way to tell whether my body would behave differently with a singleton pregnancy, but no doctor can tell me any differently, so I don’t really want to find out.

Then there is the OI issue. My babies had a 50/50 chance at inheriting the gene, and they both have it, so that tells me we either have really bad luck or it’s a really strong gene. A third baby would have the same 50/50 shot. In the thick of the fractures last October, I felt briefly like I was at my absolute breaking point. I remember a day when my husband and I drove to our pediatrician’s office to pick up several cases of formula that their Enfamil rep had kindly hooked us up with, and we decided to grab some lunch nearby while a family member watched our babies at home. We were both so exhausted and emotionally spent, we barely even spoke. I think he would agree that we were both at the lowest point of our lives, which was so opposite of how we were supposed to feel as new parents. In retrospect, I know that we were “only” dealing with broken bones and not so many worse afflictions involving survival, but it seemed like the end of the world in that moment. I do not ever want to repeat that experience, so that has turned me off even more from wanting another child. We can test the frozen embryos for OI, but then that’s a moral issue for me. I have OI, so I might not be here if technology had been more advanced when my mom decided to conceive me. We may choose not to transfer our frozen embryos, but it won’t be because of OI.

So now we are wondering about embryo adoption. I need to talk to CCRM to find out whether my OI even makes us eligible for this. Would an infertile couple want to deal with such an affliction? OI varies SO much from person to person. Even in my family, those of us who are affected have had vastly different experiences. Some of us have only fractured a few times, some of us have had more like 25-30 fractures (which in the grand scheme of things is still relatively mild). I’ve had 12, so I’m about middle-of-the-road for my family. Some of us have lingering side effects, like my loose joints that cause kneecap dislocations, but some of us have no side effects. All I’m trying to say is that there is no way to predict how mildly or severely our frozen embryos may be affected. They will all have Type I if they do have it, which means there will be no skeletal deformities, but they could have a few fractures or dozens. Would dealing with this be better than continuing with life childless?

If we can’t or decide not to pursue donating our embryos, I would want to know whether our embryos could be used to benefit OI research. That would probably be the next best thing to actually using the embryos for the purposes of conception. But I want to research the other paths first.

Or of course, we could simply pay the money to keep our embryos frozen for another year. My fear about this is that as the memories of my accident and recovery fade, as our daughters grow strong and seem less like the fragile little creatures that they were last fall, my resolve about not conceiving again might weaken. I find myself wanting a resolution to avoid mixed feelings later.

It’s a lucky but difficult position in which to find ourselves. We have some thinking to do, but getting this all down has at least put all of our options in a place other than our heads.

Sickness and Six Months!

On Tuesday, Violet and Layla turned six months old! I can hardly believe it. I remember when they were just born, wondering what their personalities would be like at six months. And here we are!

Today we visited the pediatrician for their six month well visit. Violet weighed in officially at 14 lbs 12.3 oz, which is in the 25th percentile. She seems so chunky to me–I thought for sure she would be higher up on the scale! Her approximate length was 24.75″, which is in the 15th percentile. The nurse didn’t write down her head circumference this time, so I’m not sure of the exact number, but her doctor remarked that she is very proportionate. So that is good!

Layla weighed in officially at 14 lbs 3 oz, which is in the 16th percentile. She’s only about 9 oz lighter than her sister now! At birth there was nearly 2 lbs difference between them. And over the last few appointments, she has consistently weighed about 1 lb less. She’s definitely catching up now. Her approximate length was 23.25″, which is the 1st percentile. We don’t pull much to straighten out her leg, so she’s likely a little longer than that. But her mom and dad (and our families) were not blessed with height, so we expect her to follow suit. Again, no head circumference recorded, but her growth was nice and steady on the chart.

Unfortunately, Layla spent her six-month birthday in the hospital! She started to get an upper respiratory infection about a week ago. By this past Saturday morning, she sounded pretty awful, so I took her to the pediatrician’s office. A nurse practitioner listened to her lungs, looked in her ears, and looked down her throat. She felt like it was just a normal cold and that it would clear up. By Monday evening, she sounded SO much worse. She was wheezing terribly and looked awful. We had scheduled their six-month well visit for Tuesday afternoon, so we debated about whether to wait until the next day’s appointment or take her immediately to urgent care. If you have read my writing for long, you know we’re “better safe than sorry” type of people. So I packed her up and headed to a pediatric urgent care facility.

Initially, the urgent care facility wanted to send us straight to the hospital. I was very surprised by this, as I thought I was overreacting by even taking her to urgent care. The nursing staff came into the lobby and checked Layla’s oxygen level and pulse, and then they decided to treat her. A doctor came in and showed me how Layla was breathing rapidly and having retractions. She then diagnosed her with bronchiolitis caused by RSV. We decided to stick a catheter tube down her nostrils and suction out some of the mucus. Layla really hated that, and screamed. (I didn’t blame her!) Afterwards they did an eight-minute breathing treatment. Then the doctor came back in and re-examined her. She decided that not enough progress had been made, and she thought Layla should be within arm’s reach of a respiratory therapist “just in case.” That is scary to hear!

We are lucky to have a great children’s hospital in our city, so we left urgent care and I drove her straight there. The respiratory therapist came in minutes after we were admitted to stick the catheter tube down her nose again and suction out more mucus. The gunk was so thick, it kept plugging up the tube! She screamed some more, and I felt so badly for her. What an awful night! She was totally exhausted and fell asleep very quickly after that. It was after midnight, so I was happy she was able to get some rest. They had told me that she may need an oxygen mask while she slept if her oxygen level dipped below 90, but I peeked at it off and on all night and saw levels of 91 or higher. The oxygen was never needed.

On Tuesday, she slept until about 9:30. The suctioning of her nose continued and the wheezing persisted, but I could see that we had started to turn a corner. The on-call pediatrician arrived to say that she was dehydrated and would need a feeding tube if she did not show immediate improvement! I was very shocked to hear that. She had not been demanding bottles, but I was offering them to her, and she was eating at least 2/3 or more of each one. Apparently her body was working overtime and using her fluids. Thankfully, rehydration by tube was never necessary. Throughout the day, she was very hyper–kicking her legs like crazy and squawking, so although the nurses kept telling me that she may need to stay one more night, I figured they would probably let her come home. And around 4pm, we got our get-out-of-jail card.

Since she came home, per the doctor’s instructions, we’ve been shooting saline spray up her nose before each feeding, waiting one full minute, then using the bulb suction to get more mucus out. This approach has been working pretty well, and she has improved each day. Still congested, still coughing up junk, but much better. RSV is some nasty stuff!

Lovely Layla

Some of you have commented that I haven’t mentioned Layla much lately. This is a good thing, because it means she has been healthy! My posts have been very medical-focused because we have had SO many medical appointments to attend. And luckily, our little Baby B has been doing very well and has been able to relax much of the time while her sister is poked and prodded by doctors.

Over the last month, Layla has been spending more time in her Bumbo seat. She didn’t like it much at the beginning of February, but she is slowly but surely beginning to enjoy it a little bit.

She really notices her sister now, smiles at her and wants to hold hands. Here they are lounging on our bed in February.

She takes tummy time very seriously and is finally pushing up a bit.

She has started to enjoy her exersaucer a lot, although it wears her out to sit up and play!

She looks exactly like I did as a baby, but she has her daddy’s eyelashes!

This picture was taken in November, but someone was holding a picture of me as a baby next to Layla to show our similarities.

She hung out on the couch with her sister while snow fell outside last week.

At the infusion center last Tuesday, she weighed in at almost 14.5 lbs. I’ll post her official stats after we visit the pediatrician next week for their 6-month well visit.

She has learned how to shake her head back and forth. Last weekend, our beloved Kansas Jayhawks played their rivals, the Missouri Tigers, in basketball. My mom was visiting and asked Layla, “Will Missouri win this game?” and Layla shook her head no! The timing was a complete coincidence because she doesn’t do this on command yet, but we all laughed. My mom said, “That’s what it takes to get a bottle around here!” And thankfully, Layla was correct!

She is much more social than Violet. We’re sure that she will talk first. Violet saves her energy and lets Layla cry for the both of them in the mornings when they wake up. Layla has a temper and can be a bit of a drama queen. However, then she’ll go through something like getting an IV without even flinching. She surprises me sometimes.

Layla took very quickly to eating oatmeal from a spoon. She eats 8 oz bottles of formula, probably 6-7 of them per day. She sleeps while lying on her side. She is ticklish and giggles hysterically when we tickle her. Sometimes she has giggle fits when we just look at her, which is hilarious. She flashes huge smiles at our two doggies when they come close to her, although she has yet to reach out for them. She LOVES music and immediately stops crying and smiles when we sing to her. She especially likes “Twinkle Twinkle Little Star” and “You Are My Sunshine.” She also likes it when I say “ma-ma-ma-ma” to her. We nicknamed her “Juniebug,” I guess because her middle name is June. I’m sure she will hate this nickname as a pre-teen. : )

Nothing in life has ever and could ever make me happier than becoming the mama of these two precious girls. They + their daddy have my entire heart, and I am so excited to continue watching them grow up.

Third Pamidronate Infusion

The babies’ third Pamidronate infusion went more smoothly this time. I think I know better what to expect now, and more importantly, I know THEM well enough to know when a cry is just a cry and when it is more serious. I went into Tuesday a little more relaxed than at the end of December.

For those who are just finding this blog, both of my babies inherited from me a brittle bone condition called Osteogenesis Imperfecta. They are Type I, the most mild type and will not have any skeletal deformities. My Twin A has broken each femur once, and my Twin B has also broken each femur once, plus her tibia, humerus, ulna, and skull. They are receiving a bisphosphonate via IV infusion called Pamidronate, which helps to strengthen their bones. They have these infusions every eight weeks for now, and as they grow up the frequency will gradually decrease. So far, it has been a miracle drug for us, although they still could fracture at any time.

Anyway, we traveled to Omaha for this appointment. Omaha, Nebraska has a children’s hospital with an actual dedicated OI clinic–the only one in the country, I believe. We found out about it when our babies were about a month old, thanks to FB, and they have been receiving care there since the end of October. They have an infusion center there, which is where Pamidronate infusions are administered. I walked into the infusion center and immediately saw four or five young children with no hair, clearly receiving chemo. That really puts our situation into perspective. Across the hall, a mother was questioning a nurse about what type of chemo her bald daughter was receiving that day. Later they had to switch rooms because a smell emanating somewhere near their original room was making her nauseated. Seeing all of this was heartbreaking. When my babies received Pamidronate the first time, they were inpatients. The second time, we were in the Kidney Department at our local children’s hospital, and we didn’t see any other kids there that day. Tuesday was a stark contrast.

Our babies were champs this time about having an IV placed. Violet was less than thrilled (can’t say I blame her!), but settled down quickly.

Layla did not even flinch when her IV was placed! Brave girl!

The infusion takes about three hours and 15 minutes to run, plus another 15 minutes to flush out the IV. During this time, the babies hung out on the bed together, sat in their bouncy seats, and napped.

After their infusion was complete, the nurse removed their IVs, and we were on our way home! They’ll return for their fourth infusion toward the end of April. We are lucky that this medication is available!

Overdue Update

Wow, I can’t believe it’s been so long since I posted! Time is speeding up, it seems. Here’s what we’ve up to since my last post:

Violet and I traveled to see her orthopaedist for her two-weeks-post-tenotomy check-up February 15th. The physician’s assistant used the very loud saw to cut off her casts, which terrified my poor baby. She screamed and her eyes were as big as saucers. But on the plus side, her feet looked great!

For comparison’s sake, here is what her feet looked like shortly after birth:

And here is what they looked like in January just before starting round two of clubfeet correction:

So as you can see, there has been much improvement! After her casts were removed, she and I settled into a bottle, and the orthotist arrived to take measurements for her braces. He created special, lightweight braces for her so that she wouldn’t have to withstand the weight of the normal braces.

Once the orthotist had completed his measurements, Violet had her last clubfoot-related casts applied!

She adapted to the casts quickly this time, and they never seemed to bother her. We continued with the next two weeks focusing on tummy time, introducing the exersaucers and jumperoo, visiting with family and friends, taking walks outside, etc. And before I knew it, the time had come for the next trip to the children’s hospital.

On February 28th, the very loud saw scared Violet again, despite the headphones we put on her head to try to help with the noise.

After the casts were gone, the braces went on! We are referring to them as her “shoes.”

It took her just a minute or two to figure out how to lift her legs in the air at the same time.

So far the shoes haven’t even seemed to faze her. For the next three months, we can only take them off briefly to bathe her or for general hygiene. Her feet are a bit big for the shoes right now, so we are doubling up on socks to try to keep her aligned in them correctly. After the three-month mark, as long as there is no sign of relapse, we can reduce the number of hours she spends in her shoes. She’ll definitely still wear them for naptimes and at nighttime, but her orthopaedist will determine how much she must wear them beyond that. I must admit that I’m a little concerned that her right foot is still slightly turned in. I’m making a conscious choice to trust her orthopaedist and not bring her back in there for my concern. She will be seen again in eight weeks for her next infusion, and I’ll bring it up then if I’m still concerned.

This post is getting rather lengthy, so I will cover their third Pamidronate infusion in my next post!