15 Month Well Child Visit

Stats from V&L’s 15-month appointment this morning:

Violet

Weight: 22 lbs 5.1 oz (40th %)
Length: 29.5 inches (21st %)
Head Circumference: 19 inches (98th %)

Layla

Weight: 22 lbs 3.2 oz (38th %)
Length: 30 inches (35th %)
Head Circumference: 18.5 inches (87th %)

Apparently they have some big heads! Must mean they are really smart. : )

They received two vaccines today, and they were understandably not happy about that. They have upper respiratory infections, so they were already not thrilled in general. I had to wake them up early to be on time for the appointment, so they started the day a little grouchy. I crept into their room and watched them sleep for several minutes before waking them up… sleeping babies are so angelic! When I have to wake them up early, they have drastically different reactions… Violet stands right up and starts jumping up and down in her crib with a big smile and some giggles (much like my husband, who is a morning person), whereas Layla usually wakes up and starts crying (much like me, a grumbling grump for the first few minutes of the day).

Because we can never go to the pediatrician without some type of new diagnosis, the doctor today diagnosed Layla with KP (Keratosis pilaris). It’s basically a minor skin condition that causes little red bumps to appear on the backs of her arms. She already has eczema, so we had been applying tons of lotion to the backs of her arms, thinking that it was just a particularly dry spot. But when I actually took time to examine the backs of her arms last night, I noticed that it was actually a rashy-looking patch of skin. It doesn’t seem to bother her, but they recommended that we put cream on it twice a day.

This is gross, but maybe good information for a parent in the same situation… I also asked today about a rather large skin tag that Layla now has in the crack of her bottom. I never noticed it until her ER visit for her anal fissure, and I didn’t know if having a skin tag in that vicinity of her body would have any negative implications. The doctor said it’s common after a fissure or after a bad bout of constipation, and that it’s nothing to worry about. Good to know!

I’m surprised at how similar their weight is to each other. They have different body types… Layla’s legs are longer, Violet has adorable thunder thighs, Layla has a narrow bottom and Violet’s is a little rounder. Violet was nearly 2 lbs heavier than Layla at birth, so it’s amazing to see how Layla has thrived and caught up.

Thankful that they are doing so well and that we can mark yet another medical appointment off the list. The next well child visit is at 18 months in March. They are getting some serious medical environment anxiety (Layla started crying the minute we entered the exam room, before anyone had even paid any attention to her), but we are dealing with it. There isn’t much I can do about it, but I feel terrible seeing them cry like they did today. In one year, they have had the following medical interventions:

  • Eight broken bones between the two of them (plus a few false alarms that resulted in an ER visit)
  • Eight Pamidronate IV infusions
  • 10 or so pediatrician visits
  • Casts for clubfoot treatment
  • Double-tenotomy surgery for clubfoot treatment
  • Fittings for two braces for clubfoot treatment
  • OI clinic
  • Exams and CT scan for craniosynostosis
  • Complete skull and frontal orbital advancement reconstructive surgery for craniosynostosis
  • Two craniofacial clinic days and evaluations
  • Exams for hearing concerns and plans for tube placement
  • Tubes placed in ears
  • ER visit for anal fissure
  • Tons of PT and speech therapy since February

I’m sure I’m leaving some stuff out, but that’s a lot of medical appointments all by itself. Even when the medical issue applied only to one child, I had to take both of them most of the time because my husband obviously had to work. The unaffected child sitting in the stroller still felt the anxiety and stress of her twin, I believe, and learned to associate medical environments with the crying that ensued. I’m sad for them… I wish they hadn’t had to deal with any of this, but their OI had to be addressed, Violet’s clubfeet and craniosynostosis had to be addressed. Broken bones had to be x-rayed, vaccines had to be given. I tell myself that they are lucky, that many other babies deal with so much more, but I don’t want to invalidate their feelings. They don’t understand why they have to hurt, why they have to get poked and prodded, and their feelings are justified. It’s just a shame that they are now so fearful of these appointments. And I’m sure as they grow older and more aware, it’s going to get worse!  Blah! : )

Next up: Milestones update!

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The Latest–9 Months

I have been thinking about blogging, but it seemed overwhelming to sit down and try to cover everything that has been going on with us. And honestly, I wasn’t sure anyone was even reading this, so I wasn’t sure I wanted to bother. Thanks to Mini for commenting so I know at least someone is out there. Here goes…

Health

The biggest thing going on health-wise is that Violet has a new diagnosis: craniosynostosis. This is a birth defect in which some bones in her skull have fused too early. Her pediatrician diagnosed her after I broached the subject of her funny-shaped skull, and she referred us to a cranio-facial specialist. We saw the specialist last week, and we have a CT scan scheduled for this Thursday and should receive the results the same day. There are different types of this condition, and depending on what’s going on with her bones and brain, she may either need surgery or a helmet. The surgery sounds terrible (they take out a piece of her skull so that her brain has room to grow), and we’ve read that the first few days afterwards are rough, but babies are resilient and recover well. The helmet doesn’t sound like much fun either, but left untreated, she could have seizures or go blind. Clearly, we have to treat it. She will be sedated for the CT because she has to be completely still in the machine.

We are still fracture-free (knock on wood) since November 5th and 6th! There have been many, many situations lately that could have easily caused a fracture for an OI baby–a leg has become stuck between a crib slat (this happened yesterday, and the breathable bumper immediately went back on the cribs), or we’ve struggled to push the babies’ legs through a jumperoo or exersaucer. And our babies’ bones have stayed strong and unbroken through these incidents, which is excellent.

They received their 5th Pamidronate infusion last Tuesday at the children’s hospital in Omaha. Both babies have opinions now and were not happy about getting an IV. My husband had to work, so I drove there solo and dealt with the IV placements and immediate aftermath by myself. A few hours later, my dad stopped by to visit and ended up just staying the rest of the time. The College World Series was in full-swing in Omaha, and both teams that competed in the finals–University of Arizona and University of South Carolina–stopped by our room to visit. My dad loves baseball and was so thrilled to meet them, and they gave us signed baseballs that my husband was excited about. We didn’t get any pictures with the South Carolina team, but the Arizona starting shortstop and star pitcher each held a baby, and we snapped a few pictures. It made a long day a little more exciting, and I think the babies enjoyed the distraction.

An orthotist measured Violet today for a new clubfoot brace because she has pretty much outgrown the one she received in February. Her current one was custom-made for her and is especially lightweight, but her orthopedist thinks she is strong enough now to go with a standard brace. So we are going with the Ponsetti shoes and bar. We should be getting it in the next few weeks. She only has to wear it at night at this point, so hopefully it won’t be too bothersome for her. The bar is metal and is quite a bit heavier than her current carbonfiber one, but the advantage is that her current brace is experimental while her new one is proven to aid in clubfoot correction. She still has a tendency to pull her feet inward, and I have some fear of relapse. Her orthopedist always tries to reassure me by saying that worst-case scenario, if he thinks her feet are relapsing, he will cast her for two weeks or perform a tendon transfer surgery. He says this in the most nonchalant way possible. Obviously he has never tried to entertain a child in double casts or comfort a baby who has just become awake after surgery. I’m hoping the Ponsetti shoes and bar will continue to straighten out her feet. Currently the little Houdini slips out of her shoes every single morning when she wakes up, so it’s getting more and more difficult to keep them on her feet.

Layla is teething and recently had a miserable cold, but she is doing really well otherwise. I’ll post more about her below.

In my last post, I mentioned that we sent off Violet’s blood for DNA testing to receive an official OI diagnosis. There are many different types of OI, and while our symptoms are characterized as Type I, we wanted confirmation. Plus, if anyone ever becomes suspicious that our babies are suffering abuse or something like that, we can present the results as evidence. Anyway, the results are in, and we have a gene mutation that has never been described before. Similar mutations do cause OI, so the conclusive results are that she does have OI, but they cannot match her to a type because she doesn’t fit any of the existing categories. Very interesting. This doesn’t really mean anything, except that any geneticist would probably be fascinated by our DNA. We have a long family history of this condition (dating back to at least the Civil War era), and Violet was the first to have her DNA tested, so this is significant for our family.

Are you exhausted yet? Sometimes I am amazed at all of the medical appointments on our calendar, but we remind ourselves that at least none of these issues hinges on their survival. Everything is cosmetic or maintenance, and not life-or-death. In that sense, we are very lucky.

Milestones

V&L turned 9 months old on June 13, and developmentally they are doing great! A physical therapist works with them bi-weekly to improve their strength and meet milestones.

Violet is sitting up (as well as sitting herself up) with ease. She rocks on her hands and knees, but hasn’t connected the dots yet. She rolls and gets around pretty easily. She is discovering her voice and lately has been screeching at the top of her lungs randomly. It’s an assault to our ears, but we love it. She went through several weeks of repeatedly saying “ma-ma-ma-ma,” but lately we can’t get her to say it. We must have worn out our welcome by constantly requesting that she say it. She has some stranger anxiety and separation anxiety, which is new over the past week or so. She calms down instantly when I pick her up, which makes me feel like such a mom. And reminds me of how lucky I am! She weighs 18 lbs 5 oz and has plenty of rolls, and she’s 26.5″ long. She still has her same two bottom teeth, with no signs yet of the top two front teeth. She loves jumping in the Jumperoo, loves sitting in front of a basket of toys and exploring every angle of every toy. She loves tags on things. She loves splashing in the bathtub. She makes the funniest “mean” face where she scrunches her face up like an old lady and rapidly inhales/exhales. My husband’s family says he used to do the same thing. And speaking of my husband, she looks exactly like him. Everyone remarks on it when they see her.

Layla looks exactly like me, except she has my husband’s long eyelashes. There is no question that CCRM grabbed the correct tube of embryos! Layla army crawls across the floor and gets better at it daily. She also gets on her hands and knees and rocks, and maybe seems a little closer to figuring this out than Violet. She is suddenly sitting up with ease, finally! She says “da-da-da” (music to my husband’s ears). She is clapping, which is new as of last Friday. She also likes clicking her tongue to mimic us and also shaking her head back and forth. She is not as loud as Violet, but she cries a lot more forcefully. She doesn’t really have the stranger/separation anxiety yet and is pretty gung-ho about everyone who pays attention to her. She also loves splashing in the bathtub and breaks into a huge smile while we set her in the water. She has her two bottom front teeth, and now the top left front tooth is very nearly breaking through. She has been impossible the last two days because of it. I stay patient by reminding myself that it’s just a phase. : ) Layla is more dramatic and more demanding than Violet. She definitely lets us know when she needs something and when she’s not happy with something. She weighs 18 lbs 8.9 oz, so she is now 3 ounces heavier than Violet! She was almost two pounds smaller at birth, so she has really caught up. She’s a quarter inch shorter–26.25″ long.

Both babies are eating lots of fruits and veggies now, along with puffs and Cheerios. I think they’ve tried 18 foods now. Their favorite food seems to be bananas. They still sleep all night in their own crib–I don’t remember the last time either of them woke up in the middle of the night. We did the cry it out method, and it worked so quickly. It was the right decision for us.

Life in General

We have been tested so much this year, and as rewarding as it has been, it has also been exhausting and hard. I think it has taken a huge toll on me, but I just keep going and put one foot in front of the other. That’s all I can do. It has probably taken a toll on our marriage, but we are still going strong. Because I don’t work (although I am looking for a job now that the babies appear strong enough for daycare!), I shoulder the brunt of these medical appointments. I take them for shots, take them for clubfoot stuff, take them for their infusions, take them to the cranio-facial specialist, help with physical therapy, etc. Not to mention just the day-to-day care that goes along with 9-month-old twins. It can be a very lonely job. I am doing the best I can, but know that I could do better. When I return to work, my husband and I will share the medical stuff so that neither of us is taking too much time off from work, so I think that will help us to be more on the same page. I feel that I am my own very last priority, and it really shows in my appearance and my energy level. I need to work on that. My husband is wonderful and encourages me to do things for myself, but I just don’t have the energy most of the time. I am going to do better.

Pictures

#1–Playing on the floor together.
#2–Studying a Puff the first time we gave them one.
#3–Layla hanging out on the deck on a nice, breezy evening.
#4–Violet wearing her daddy’s baseball cap.
#5–Layla meeting University of Arizona’s starting shortstop Alex Mejia at Omaha Children’s during a Pamidronate infusion.
#6–Violet meeting Arizona’s star pitcher Konner Wade at Omaha Children’s the same day.

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!

Four Month Well Visit

Since Violet had a short break from casts, I took both babies to their pediatrician for their four-month immunizations last week. They were four months and 14 days old at this appointment, and it was my first solo trip out with both of them!

First we weighed both babies and measured their length and head circumference. Violet weighs 13 lbs 0.2 oz, which is the 26th percentile. She is approximately 22.5 inches long, which is the 2nd percentile. I say “approximately” to describe her length because we don’t allow anyone to pull on their legs to stretch them out. I very gently pull a little to try for an approximate length, and we go with that. She’s probably actually slightly longer. The nurse inaccurately wrote down Layla’s head circumference, so I’m not sure what the measurement was, but she’s in the 41st percentile. At birth, she was 7 lbs 10 oz and 18.75″, so she is growing!

Layla weighs 11 lbs 14 oz, which is the 9th percentile. She is approximately 22.25 inches long, which is the 1st percentile. She’s finally on the growth chart for length! Her head circumference is 16 inches, which is the 27th percentile. A birth, she was 5 lbs 14 oz and 17″ long.

We receive a paper during each well visit on which the nurse writes their weight/length/head circumference stats, and it also gives some information that applies to their current age. At four months, we can start rice cereal with a spoon as long as the baby has good head control. They should be reaching and grabbing, and starting to work on rolling (goal for that is six months). We need to give them tactile toys, and we should be singing, playing peek-a-boo and showing our babies their gorgeous reflections in the mirror. We should be doing tummy time several times per day. We should be reading to them and encouraging them to sit up. We can try an Exersaucer. We should start a bedtime routine. We should give them 1 mL Vitamin D per day.

I can’t believe how much they’ve grown!