Month: May 2017

Day 9 after surgery. Currently listening to Disney Princess CD in a desperate attempt to pacify Baby Girl and pry her from my hip for twenty minutes. Sissy says she sounds different now. Friends have asked if her voice has changed. I wouldn’t know – unless her new voice is a high pitched whine which is all I’ve heard for the past nine days.

The surgery itself went well. Nurses kept her occupied with toys and colors before surgery. Baby Girl had no idea what was about to happen. Protested mightily at taking off her pj’s and putting on the hospital gown even though it was covered with puppies and kittens. Absolutely refused to put on the fuzzy socks. Once they got her slightly sedated off she went, barefooted, into the surgical area, where I could not follow. Thankfully my friend Charlotte was there to distract me. She and Tony and I ate McDonald’s breakfast in the waiting room and it wasn’t until she left that I felt the nerves kick in. Only had to wait about ten more minutes though until the surgeon came and told me she had done perfectly and would be going back to recovery very soon.

When they finally let Tony and I back to the recovery room Baby Girl was just coming out of the anesthesia and she was frantic. I was already taking my shoes off when the nurse said “Mama you can get in the bed with her.” I crawled in and tried to console her but she would not be consoled until she was laying on top of me and I was singing Twinkle Twinkle Little Star. She fell asleep on my chest. And the nurse had already given her her paccy back so my strategy of taking her paccy’s away (because I thought it would hurt to suck on them) fell completely flat. Amazingly, the doctor said it was perfectly fine for her to have them. So I just totally let it go. Still letting it go nine days later… probably will be letting it go for another few months. Maybe years.

That was just the beginning though. Once we finally made it up to a room, the nurse told us that she would be in quite a bit of pain for a good 7 to 10 days. I thought – no problem, I got this. At day 9 I can tell you – I don’t got this. It has been ROUGH. People ask how she’s doing and I hedge … she’s doing OK I say. The truth is she has major ups and downs. She’ll have a good few hours where’s she laughing and playing and happy. And then the other 22 hours of the day she’ll be whining, crying, laying on my chest, stuck to my hip and otherwise totally miserable. And I feel so bad for her but at the same time I’m thinking will this ever end?!

I have to say Cook Children’s Hospital is pretty neat. The pre-surgical area is just one big room with kids in cubicles and nurses and doctors everywhere. The word swarming comes to mind. I didn’t mind it – it was actually pretty interesting and distracting at the same time. They had teenagers or maybe young adults (I can hardly tell anymore) whose sole purpose it was to bring toys to the children. Very nice nurses, very nice people everywhere.

And the nurse in the room was great, too. I was completely surprised at how much we were NOT bothered. If she was asleep they let her sleep. There would be hours going by where I would not see a nurse at all. The first nurse we had let her eat anything she wanted. Even crackers and stuff like that. She also encouraged us to visit “The Zone” – the play area. Baby Girl wasn’t ready for The Zone the first time we went. She just cried until I took her back to the room. The second (night) nurse did not want Baby Girl to eat anything except soft stuff and she had the harder job of administering more medications that were yucky. But we survived and Daddy arrived to take us home the next morning by 10. She slept the entire way home. AND SHE DID NOT SNORE.

Baby Girl is no longer snoring when she sleeps. This stresses me out because I am so used to listening to her while she sleeps that now I have to lean over and look at her and even put my hand on her chest to make sure she’s ok! Because, yes, she is still sleeping in mommy’s room.

Very slowly she is improving. We are just taking it day by day. Some things that have taken me by surprise –

1. Her breath. Holy Mother of God it’s like something died in there. Which I suppose it did. But couldn’t someone have warned me? Sonic doesn’t have enough mints for this!
2. The surgeon did not come check on her the next morning. We have a follow up appointment in four weeks (well three now). I guess she’s supposed to be perfectly fine between the surgery itself and the follow up appt a month later.
3. The lack of instruction regarding care at home. It was only days later that I discovered in my original packet from the doctor that I received at our “sleep study results” appointment the post-surgery instructions and care. Did not realize that was in there. Totally winging it before then.
4. The drastic change in my Baby Girl. She has lost weight, doesn’t want to eat, spent a week being constipated, and is sleeping without snoring but still wakes up from pain. I am still praying and hoping another few days will make a world of difference for her and we will come through this having learned a lot and with a new and healthier zest for life.

In my usual fashion I was completely prepared up to the day of the surgery without any thought of what happens afterwards. If anyone ever tells you that your child needs her tonsils out – yes, she probably does – but BE PREPARED. I wasn’t.

Thanks for the wine, Dad.

Options for pediatric sleep studies are few and far between. There were basically two options in the entire Dallas area. The first one I called wanted $3300 for their time. The second one quoted $900. There seems to be a little discrepancy here between what is actually the exact same procedure. One goes through insurance… one does not. I bet you can figure out which is which. But that is a different topic, for another time.

Obviously, I chose the $900 study. Everything takes its sweet time of course, and about a month after the ENT appointment we were finally on our way to do the sleep study. I had zero idea what to expect. The first surprise was that we were to arrive at 8:30 pm. Baby Girl will already be asleep by then I said. They weren’t concerned. 8:30 is the earliest time you can arrive. No one is here before then. Well alrighty then, I guess we will figure it out. At 7:30 pm, after an exceedingly long day, we are in the car ready to tackle the unknown. Baby Girl wants to know where we are going in the dark. We’re going to sleep in a hotel! I say. Since she doesn’t know what a hotel is, she just looks at me sideways and then goes to sleep.

The place is pitch black when we arrive. No lights anywhere – and I can’t even figure out where the entrance is. I do a reconnaissance around the building. Leaving Baby Girl asleep in the car I go up to a door and press the buzzer. Finally a light comes on and the nurse/receptionist/technician person comes to the door. Hi, she whispers. And I have totally forgotten what her name is, so we’ll just call her Annette. Hi, I whisper back. The kid is asleep and I need to bring all the stuff in. I lug all our sleeping must haves through the front door and go back to get Baby Girl, who sleepily snuggles into my arms before spying the stranger waiting at the door. WHO IS THAT? Hi whispers Annette to Baby Girl – what’s your name? I can’t really figure out why we are whispering right now, as there is no one else around, but I go along with it. Baby Girl just stares and says nothing.

Annette leads us through the building, whispering the entire time – showing us the bathrooms and the technician’s room and finally to our “hotel room.” The place is basically shaped like a circle once you get through the main reception area. The rooms are arranged so that the technicians can see all the door numbers. There’s only four sleeping rooms total. So I guess that the same technician does all four rooms in a night. She has a helper, whom we will call John. John is a super nice guy – obviously has kids of his own and Baby Girl warms right up. Annette is a little high strung (even though she is whispering) and she strikes me as being a complete control freak. Which is probably very necessary in what she has to do. She obviously requires John’s help but is somewhat put out that he even needs to be there.

Baby Girl has fallen asleep in my arms again while we are waiting for things to get started. But when I lay her on the bed she wakes up again. The room is kind of cool – pretty much like a hospital/hotel room. Normal full size bed, carpet, a chair and lamp to one side and a phone and that’s it. A TV on the wall that we never turn on. I was expecting a more sterile looking environment – stainless steel gurney and “nurse” standing over us with an injection looking sinister. I’m relieved to find a cozier atmosphere. Baby Girl is completely unfazed by any of it. She has barely said a word. Just looked around with interest and showed John her stuffed kitty.

They start putting all the electrodes and belts and things all over Baby Girl. She literally just sits there and lets them do it. Annette says “wow what an even tempered girl!” Too which I reply – after a moment of stunned silence – “No she’s not usually. At all.” But she’s basically asleep anyway and she is being SO GOOD. I can’t believe it. She lets them put all the electrodes on and they even have to press this goo on her head to keep the electrodes from falling off and then tape on top of that and she doesn’t utter a sound. She watches, and even helps by handing them the little cords and lines that they need to hook up. They put the oxygen thing on her finger and she thinks that’s the coolest thing ever. It lights up like ET (not that she’s ever seen ET of course) and she keeps showing John how neat it is.

Finally they wrap this gauze all over her head and everything is hooked up and it’s time for sleeping. I’m just amazed at how much crap is all over my Baby Girl – and how well she’s taking it. So they turn out the lights and she snuggles up to me and falls asleep within 10 minutes.

As usual, Baby Girl wakes up multiple times and snores and everything else she normally does. At one point she wakes up, stands up and turns around and then lays back down. Leaving her totally tangled up in the wires. Another time she rolls dangerously close to the edge of the bed. Both times nurse Annette comes in to fix things. Obviously I am awake and keeping watch over my fledgling. The gauze does not stay on her head. The oxygen thing does not stay on her finger. Eventually Annette moves it to her foot. Somehow the night passes. At 6:30 in the  morning Annette bellows over the loudspeaker that it’s time to wake up – WTF happened to the whispering?! – and Baby Girl FREAKS OUT. Later I find out that when the good morning call came, Baby Girl was in one of only two REM stage sleeps. And that she was wrenched out of it. Poor thing. It’s almost funny, now. When Baby Girl’s heart rate (and Mama’s!) finally slowed down Annette and John were able to take all the crap off of her. Baby Girl even helped. Only a couple whiny moments where the tape pulled her skin.

As we left that morning Baby Girl was in a great mood, happy and smiling and singing in the car. I, however, was totally drained. At least one of us slept!

After another month we finally got to learn the results. Baby Girl woke up 41 times in the night. She stopped breathing for more than 10 seconds 11 times. Her oxygen levels were too low. She had only two REM sleep periods, for about 30 minutes each. All in all, terrible results. Her physician said that the tonsils must come out, and the adenoids, and let’s put in ear tubes since we’ll be there anyway.

So wish us luck, say a prayer, cuz Monday morning we’re on our way to Cook Children’s hospital in Ft. Worth.

Baby Girl is having surgery at the end of this month. Tonsillectomy, adenoidectomy and ear tubes inserted. Eleven days before her third birthday. This is going to be a big deal. She will have to stay in the hospital overnight and it will take approximately 7-10 days for her to recover, I’m told. Hell, I was 30 when I had my tonsils out and it took me 45 days to recover! It SUCKED. I’m grateful for the reduced recovery time for my 2/3 year old – my sanity would be severely tested if it took her 45 days. I would expect you all to work out who was going to bring me a bottle of wine each day.

This has all been a long time coming….

Baby Girl has had sleep issues since she was very small. We would go through periods of “good sleeping” and “bad sleeping” – the length of the “bad sleeping” far outdid the length of the “good sleeping.” I read books on sleep training, we had our nightly rituals, I did it all just right. To no avail really. She has woken up multiple times a night and either cried, gotten out of bed, refused to sleep, or, very rarely, gone back to sleep on her own almost every night for the past two years. In any case, I was awake every single time. We recognized that she had trouble breathing at night – I thought it was allergies. I switched her pillow out in case it was full of dust and/or mold. She snores. Loudly and persistently. She is often cranky during the day. She doesn’t like to sleep alone.

Her original pediatrician never said a word about her enlarged tonsils. But one day – maybe she was yawning – I noticed how big they are. They are so large they almost touch. At first I thought that tonsils maybe were things that started out large and you grew into them. But then she started getting sick a lot. LOTS of colds, sinus issues, drainage, ear infections and coughing. Lord, the coughing. She coughs anytime she is laying down. She coughs in the car seat, especially if she falls asleep, she coughs while she is eating, she will cough so much she gags herself. She will cough so much that she wakes herself up. And then she cries.

I had her at her new physician’s office one day because of a cold or something and she took one look in her mouth and said to me “has anyone ever told you her tonsils are huge?” And I said um no. They’re not normal? She kindly explained that no, the tonsils are not supposed to be so large that they interfere with her breathing. And her swallowing. And her daily life. You should take her to a Pediatric ENT she tells me. Lightbulbs are exploding all over my head.

So after the many weeks it took me to find a Pediatric ENT anywhere near here, we went 45 minutes down I-35 EAST (HOLY SHIT I HATE THAT ROAD) while Baby Girl fussed and fretted in the back seat. Once we get there, they have a great little play area. So great, that Baby Girl has no intention of leaving the play area after having spent nearly an hour in the car to go with some lady she has never seen before. I pick her up, while she is protesting loudly, and we go with the nurse. The doc seems nice. He has a great manner with the kids. Baby Girl starts laughing and having a good time. He says to me that her tonsils are exceedingly large – does she snore? Yes? I’m silently berating myself for how long it took me to figure out there is something really wrong. He looks in her ears – “I bet she has some hearing loss” he says. Wait, what?! No, Doc, she hears fine – I swear. Even though she failed her newborn hearing test three times – she can now hear me try to silently open a piece of chocolate from down the hallway. He says “remind me to do a hearing test after you have the sleep study done – I’m willing to bet she has hearing loss with this amount of fluid in her ears.” But her ears don’t hurt, I argue – she doesn’t complain. Well, he patiently explains, her ears are not currently infected, but they are clearly not draining correctly. Because there is fluid in them. Oh, I say meekly. I see.

He says we need to have Baby Girl do a sleep study. I stupidly ask “they do that for kids?”. Even though I know the answer, I am stalling while my brain is trying to figure out why it took me 2 years and 8 months to get to this point. My mom and brother both have sleep apnea – surely it should’ve occurred to me that Baby Girl could have the same issue. I’m told it isn’t exactly the same – Baby Girl probably has obstructive sleep apnea. Meaning she is basically choking on her own tonsils. Nice. That’s something you always want to hear about your precious one. That would, however, explain the chronic coughing. Also, he throws in for good measure – if she’s got obstructive sleep apnea, it will lead to behavioral problems and issues in school. Hmmm. I think we’re already there with the behavioral problems. I mean, I know she’s a toddler, but honestly she is a very difficult and cranky toddler an awful lot of the time. Maybe some of that can be explained by lack of correct sleep?!

As we leave the ENT’s office I am both reassured and horrified. None of this sounds like a walk in the park, none of it sounds like something I want my Baby Girl to endure. But maybe, just maybe, if we get through all this Baby Girl will actually learn to sleep well. And maybe we will all be happier.

Coming soon – the actual sleep study and results. Meanwhile, here is an adorable picture of Baby Girl sacked out one day in her Sissy’s bed.