Monday, August 25, 2008

Babies and sleep studies - a ridiculous combination

Thursday night, we made it to the sleep clinic in Dallas at 8:00 on the dot. A tech showed us to Brooklyn's room. It is a pediatric sleep clinic, so they have each room decorated in a cute kid's theme. Our room had beach stuff all in it, including a big stuffed Nemo hanging over the bed. It was basically like a kid's hotel room: twin-sized bed, rocking chair, fold out couch for the parents, TV and DVD player, and a nice bathroom.

The tech hooked Brooklyn up to lots of electrodes. I lost count of how many there were. She had them all over her head, on her jaws, her forehead, by her eyes, on her chest and collarbone and on her calves. She had an elastic band with some type of monitor around her chest and another one just like it around her abdomen. She had a pulse ox monitor on one of her feet. All of the wires were about 3 feet long and were hooked into a box that we had to move around every time we needed to move Brooklyn. This made diaper changing, nursing, and especially trying to calm her down very, very challenging.

The tech wrapped Brooklyn's head in gauze to try to keep all of the electrodes on because she wanted to tug on all of the wires. Around 10:00, I nursed Brooklyn and she dozed off. The tech had told us that he wouldn't put the cannula on her nose until she was actually asleep, so I let them know. But as soon as we tried to move Brooklyn, she woke up. David stayed at the clinic until about 11:00 and tried to help me get Brooklyn to sleep. She didn't want to sleep. I really don't blame her...I'm sure she was uncomfortable with all of those wires all over her. This was about the time that she became really fussy. I bounced her in her car seat and she finally fell asleep...until I stopped bouncing for a few seconds. Then she wouldn't go back to sleep.

By midnight, she was having an all-out screaming fit. I don't know whether this is to be expected, but when she started throwing a fit, her heart rate got really high (180's and 190's), and her oxygenation started dropping fast. The alarms on the pulse ox machine started going off when her oxygenation was in the 70's. I got freaked out and ran down the hall for help when it was in the 50's. There were two techs in the nurses and no doctors. Brooklyn was doing this horrible pain scream. They checked to see if anything was pinching or poking her, and it wasn't. The monitors eventually couldn't read anything and dropped to 0.

I got her back out of the carseat and finally calmed her down. I would have walked her around the room, but I couldn't because of all the wires. I bounced and rocked her back and forth in my arms and distracted her with her musical keys and her Gloworm. After about 30 minutes of that, she was calm again, so I tried to put her back in the carseat. Bad idea. Another screaming fit, more alarms. This time I calmed her by giving her 2 ounces of formula in a bottle. As soon as she finished, she was upset again. She was arching her back and coughing and gagging because of her reflux.

Brooklyn cried and cried and cried. I changed her diaper, I tried to burp her. She had taken all of her medicines for that day. I sang to her, whispered to her, rocked, bounced, etc...etc...I told the techs I didn't know what else to do. I was so exhausted because I had worked all day. And I was so frustrated because I knew that they weren't getting the data the doctors needed from the sleep study.

Around 2:00 in the morning, one of the techs said that if I could get her to sleep with me holding her, that would be fine. She suggested that I nurse her and then hold her and we could both sleep. So that's what I did. Sort of. I was really nervous that I was going to drop her or that she was going to suffocate or something, so I couldn't sleep. At 3:00, Brooklyn was so out of it that I was able to gently set her in her carseat. A tech came in and taped the cannula to her pacifier. Brooklyn spit the pacifier out within a few minutes and wouldn't open her mouth to let us put it back in. They didn't want to put it on her nose because it might wake her back up. So I don't think they really gathered any data regarding her respirations and whatever else that is supposed to keep track of...which seems like it would be pretty important in her case.

I slept some between 3:00 and 4:30. The alarms on the pulse ox monitor would go off every time her oxygenation went below 80, and that probably happened 3 or 4 times during that hour and a half. The techs came in and out a couple of times to check on her. At 4:30, Brooklyn started getting gassy and woke up. I gave her her pacifier and rocked her carseat. She went back to sleep. This happened several times. Then she woke up with the hiccups. Then she had a dirty diaper. I got her out of her seat and changed her. By then, it was a little after 5:00 a.m. and the tech came in to tell us that the test was over. He sprayed this baby oil-like stuff on all of the electrodes and pulled them off. David picked us up and we headed home. Wouldn't you know it, the little stinker slept the entire trip back.

The sleep study was a completely frustrating experience. I don't think she slept long enough for them to really be able to tell anything. I know her respirations weren't monitored. And my poor baby just had an all-around horrible night. I think it is going to end up being a pointless waste of money.

We go back for the video swallow study this Friday. Hopefully it won't be as bad.


Cibele said...

Oh no... what a terrible expererience. I hope that got any data from it. I so sorry little baby that you have to endure all of this. Not fair!!!!!!!!!!! HUGS MY FRIEND...

Kate said...

You poor thing. I am so sorry! That is just miserable.

Beth & Steven said...

What an awful experience. I'm so sorry you had to go through all of that. Hopefully they got some info??? She is such a beautiful little girl... even with electrodes all over her. Hope you both get some sleep tonight.

Sam said...

Poor sweet tired baby. I am glad that it is over. I hope they are able to get something from the test.

Carrie27 said...

Thanks for updating, I've been thinking about you guys since Friday.

What a horrible experience for you and Brooklyn. I'm so sorry you had to go through that. I hope that the doctors can get some information from the test, even if she wasn't asleep as long as she should have been.

And Baby Makes Three said...

Bless her little heart...I hope they are able to get something out of that baby should have to go through what little B is going are one strong mommy!

Hope said...

You're so right, it's horrible for all involved. I wasn't allowed to let her sleep in her car seat, but I don't think it would've mattered. The cannula with the wires sticking out made her nose bleed for 2 days.

I'm sorry she had a rough night. Good luck at the swallow study. They are alot easier, thankfully.

I have a feeling Brooklyn and Ava are going to keep us on our toes this winter.


Momma Mary said...

I can't remember -- have you looked into allergies with her?? They recently did a story in the news, and I was immediately reminded of your situation when I heard it. I know -- I'm not a doctor, but I know that it took this child's doctors years to find out that the baby was allergic to a LOT of things...

Poor thing! I can't imagine doing a sleep study with an infant. Hopefully the doctors will get some use out of the bit of information they do get. :)

As always -- I'm keeping you guys in my prayers!

Emily J. said...

hey Amanda, I know that that experience must of been heart wrenching, I am sorry. Sometimes we question the validity of all these 'tests' and 'procedures'. I know I do and sometimes I even question if its the 'right' thing to do if I am not comfortable with it. And since doctor's don't give us options but orders (like in my case) you don't think twice about it until you see your precious baby in pain or crying. I know the feeling of desperation that a mother feels when confronted with science and just plain motherly love.
Even though our daughters have different illnesses the sound of their cries and looks of sadness touch us the same. I send you all the comfort and hope that you can find a moment of peace.
Praying for you and your family.

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