Blood and Frog Legs

More health issues

About a week after Lily was born, we got a letter from the state of NJ saying there was an abnormality with some of her bloodwork. A friend of ours said it’s a common problem because sometimes the blood taken coagulates before the lab gets it. So we weren’t particularly concerned.

A few days later, we got a call from the pediatrician saying she had a script for Lily to have bloodwork redone. “It has to be done in the next two days,” she told us. “If I were you, I would come here immediately and then take her right to the hospital.”

What I heard as a mom: immediately and hospital.

“Should I be worried about anything?” I asked.

“No, no,” the doctor said.

Too late.

“Also, if Lily has this condition, she’s going to need to eat every two hours from start to start. So until we know if she has it, you’ll have to feed her every two hours.”

Every. Two. Hours. We had just begun to space our feedings out! Now even at night - Every. Two. Hours. 

I tried to hard to resist Google as we drove to the doctor’s office. Jon couldn’t and summed things up for me. From what he could find, if Lily had this “condition,” all it would probably mean is she might be hypoglycemic. 

Okay. No big deal. I am, and so is my mom, so it stands to reason. She’ll just have to make sure she has a snack with her all the time. Not a bad idea anyway. Who doesn’t want a protein bar every now and then?

We got the script and ran right to the hospital. I loved being asked at reception if Lily had been there before- “Yeah, two weeks ago, when she was born.” 

BS paperwork, BS paperwork, sit in some chairs with a buzzer like we were waiting for a table at Outback Steakhouse, and we were finally called in. 

I hadn’t been with Jon when they did Lily’s testing the day she was born, being that I was getting my stomach stitched up and recovering. I don’t think he was there for the blood test part anyway. 

Otherwise, I imagine he would’ve told me about the horrors that awaited. To get blood out of a baby, they prick its heel and squeeze. A lot. There was a slip of paper with 5 circles somewhere between the size of a dime and a nickel on it, and they all had to be filled in with blood. 

It. Was. Awful. 

It goes without saying (a stupid expression because I’m clearly going to say it anyway) Lily screamed bloody murder. The nurse had to keep squeezing her to get enough blood. When there was no squeezing for a few minutes, she’d calm down, but she started up again with each pinch. It was the kind of loud, agonizing scream that hurt my heart to hear. 

I swear the nurse glared at me a few times. I guess she didn’t enjoy the screaming baby either, but I’d think she’d be used to it, at least more than me. Maybe she could have been a little more comforting instead of just huffing and puffing and saying, “Could you hold her still?” in a tone that said she was fed up with my baby squirming while she MILKED BLOOD OUT OF HER HEEL. 

I was so glad when that was over.

Later that night, I couldn’t resist hitting up Google again. The script we’d gotten from the doctor said something about fatty acid absorption, so I looked that up in infants. There is a really strange disease that exists in very rare cases. If Lily had that, her body wouldn’t be able to absorb fat and use it as energy like most people do. Meaning she would have to eat and incredibly low fat diet for most of her life. Not at all what hypoglycemia is. There was something in the readings about low blood sugar, but what it was said that if her blood sugar dropped, she could die.

DIE. Low blood sugar could equal death for my baby. So, yeah. I would definitely be feeding her every 2 to 4 hours. (Everything I read said to feed babies every 3 to 4 hours, so I guess the two was just the doctor being cautious. Which I did appreciate.)

I was exceedingly paranoid about this new, extremely distressing information for a few days. Then I sort of came to my senses and thought we would probably have had some bigger issues by then if Lily really had this condition. We didn’t get the blood work results for a little over a week, but of course she turned out to be fine. Hallelujah. Just an exceedingly scary couple of days.

Also noticed at the six week check up was something called infant torticullis, which I had already diagnosed myself. Basically, it’s a stiff neck muscle. You know, the way people get a stiff neck from sleeping in weird positions. Babies can be born with a stiff neck from being crunched up in the womb. (Bet my OB would be laughing again because he told me to have this large baby earlier.) Lily’s head is usually at an angle when she’s laying down rather than looking straight ahead. We were given some stretches to do with her to improve it and told we might have to take her to a physical therapist.

You know, in my copious amounts of free time.

We’ve done the stretches with her, and the doctor didn’t mention anything about it at her two month check up. Her head is still tilted frequently, but it’s definitely better, and she doesn’t resist when we readjust her. Looking up the long-term effects, it doesn’t really seem that there are any. Just stiff neck muscles. With proper stretching, it will hopefully fix it so by the time she is about six months old.

And another thing…

All babies who are born breach in the US have ultrasounds on their hips to make sure they do not have hip dysplasia. Luckily, a friend of mine had a baby two or so weeks before me and mentioned the ultrasound to me just before our six week pediatrician visit. Other doctors and nurses had mentioned it to us, but we sort of forgot, as did our pediatrician. I had to remind her so she could give me the script for that. 

In order to have the ultrasound, we had to find a radiology location that had a pediatric radiologist on staff. University Radiology is a big radiology group in this state, and even though there is one office 10 minutes from us, the closest one with pediatrics was half an hour away.

We made our appointment and put it on the calendar. On the day we got there, we had some issues checking in. Our appointment had been canceled due to us showing up two hours late. We were not thrilled as we were 100% sure we were not late. When Jon made the appointment, he promptly told me it was for 1:30 on the day of. We put it on the calendar, and we arrived at 1:30. They receptionist told us our appointment had actually been at 11:30. Neither of us could believe we would make an appointment for somewhere so far away with an infant at that hour. I was insistent that whoever scheduled it in their computer must have just picked something with a one from the drop-down menu. The receptionist asked us what our confirmation email had said; we never got a confirmation email. Luckily, when she saw how far we lived, she did something tinkling and managed to get us in.

Note : I love my husband, but he should never be allowed to be in charge of things having to do with time. He’s messed up airport procedures a minimum of three times. When we got home from the ultrasound, several days later, he found a piece of paper where he had written down 11:30 for our appointment time. Facepalm.

Anyway, luckily the ultrasound wasn’t a big deal. There were minor problems, like the fact that Lily decided she was hungry just before they did it. I already felt under a time crunch since I knew we weren’t there at our appointment time. The nurse asked us if we could give her a bottle to calm her down, but yeah, nursing babies don’t have bottles at their disposal. So we had to hold a pacifier in her mouth and try our best to keep her calm while the ultrasound was going on. She also had a wet diaper, which made me worry that we would be judged for not having changed it in a timely fashion, which I know is absurd. But I was so hyper sensitive because of the timing issue.

A few days later, our pediatrician called to say that Lily does in fact have hip dysplasia. We had to go to University Radiology to pick up a disk with her ultrasound; luckily, this could be done at the one 10 minutes from our house. Then we had to make an appointment with a pediatric orthopedist to get this checked out. The closest one is about 20 minutes away from us, and luckily they take our insurance.

The day I went, I brought my mother-in-law who was visiting. Jon was going to meet us there, but he was coming from work, so it took him a little longer. The parking situation at this place turned out to be pretty dire, so by the time we walked in, it was just about time for our appointment. I knew there was paperwork that had to be filled out, so I was getting anxious about the time crunch again.

And then Lily pooped.

This place is massive. You sign in on iPads in a lobby then wait in a huge room for anyone at one of 10 different desks to call you up to give you paperwork and take your insurance information. Doctors from multiple angles are calling their patients back. Everyone is nice and relatively relaxed, but I can never really describe myself as relatively relaxed. I had already signed in, so I sent my mother-in-law to the waiting room while I took Lily to the bathroom.

And what she had done is something my husband refers to as a “poopsplosion-“ where poop ends up everywhere, including on her thighs, her onesie, and usually either up her front or back. I was already on the verge of screaming because of my time crunch anxiety, so this didn’t help. Then it turned out that I had no spare clothes in the diaper bag. So I had to call Jon, who was luckily just on his way up, and tell him to bring his diaper bag.

Unfortunately, the spare outfit he had was this one piece pajama that goes over the head with long sleeves. I really wasn’t used to dressing Lily at this point, as Jon did it the whole time he was home. Trying to get pajamas over a baby’s head and then on her arms while she’s fussing when you are mad freaking out is not the easiest. I texted Jon, who sent his mom in to help me. She had to dress Lily while I tried to clean up the copious amounts of stuff that were now strewn over the bathroom – dirty diapers, dirty wipes, dirty clothes…

Eventually, we got it all squared away. Jon filled out the paperwork and talked with the insurance nonsense. It wasn’t long in the waiting room before we were called in.

The orthopedist was super impressed we brought our ultrasounds with us. (Yet another reminder that no matter how unprepared to be parents we feel, we are way more prepared than the average bear. But seriously - who doesn’t bring the basic necessities to your appointment?) She explained when we are born, the socket part of the hip joint hasn’t fully formed. When a baby has hip dysplasia, the ball part of the joint isn’t sunk into the socket deep enough for it to form properly. This can lead to limps, different sized legs, and some serious issues as you get older. However, when it is caught very early, it is easily fixed with something called a Pavlik harness. https://www.alimed.com/wheaton-pavlik-harness.html

If you want to see what it looks like. For those of you who don’t click on the link, it goes around the baby’s entire body. Over the shoulders and then around the chest to hold it in place, then it holds their legs out in a frog position. For some reason, when their legs are in this position and they kick, it sinks their hip bone deeper into the joint.

Lily fussed a tiny bit when it was put on her, but then she sort of seemed OK. The doctor assured us that babies don’t mind wearing it. Of course, my mother-in-law asked us when the last time this Dr. had a conversation with a six week old was. Point.

We were told not to remove the harness at all. Just leave it on her all the time. Bathe her around it, change her diaper around it, dress her around it. No pants or anything with legs for a while. So there goes a good amount of our clothing. Good thing we never buy anything full price, I guess. Despite it being cold, Lily is now in a staple of onesies without pants, and we just throw a blanket over her legs. 

I know it’s common place, and I know Lily doesn’t mind the harness too much. But I left feeling a little defeated and slightly heartbroken. It’s hard to watch your baby being put into this device and knowing she has to wear it full-time for a while. We were told 6 to 8 weeks is the minimum, but as her case is pretty minor, that would probably be how long she would have to wear it.

I worried. I worried about getting her into clothes. I worried about the harness getting dirty with diaper changes. I worried what people would say to me when we are out and they see her in it. I know that’s a stupid thing to worry about, I don’t want people looking at her with pity like something is wrong with her when it’s so minor. I worried about her knees! If my knees were strapped at a 90° angle for the most part for six weeks, the discomfort I would be in would be unimaginable.

Of course, there is the weird truth babies don’t have kneecaps. So hopefully her knees won’t bother her.

To be continued…