So here we are... Playing the waiting game. The nurse & the med student that came in this morning both agree that she's ready to go home. Just waiting on our team of doctors to come in, evaluate her, and sign the paperwork... Which as the nurse says, could take all afternoon, but hopefully it will happen sooner rather than later and we can head home!
Thursday, February 24, 2011
I dont' think I've ever gone to bed hoping & praying that my baby would wake up and want to nurse all night... But I totally did last night. Before bed she nursed at 4:30, 7:30 and then again at 8:30. She finally went to sleep around 10:30, and woke to nurse at 11:00pm, 2am, & 5am. Praise God.
Wednesday, February 23, 2011
All day I've felt like I'm the quarterback and Lucy is the wide receiver and I've thrown this amazing pass her way and all she has to do to win the game is catch it.
She's been refusing to eat, bottle or boob for a week now. So this morning at 10am she received yet another feeding through the tube in her nose. Soon after she seemed really irritable and we decided to give her Tylenol through her feeding tube. I wanted to do it that way because they Tylenol here tastes like poo and I didn't want her to associate anything nasty with her mouth. As the nurse pushed it through, it leaked all over the place. You see, there was this teensy hole in her tube. The nurse who put it in had taped it up to avoid having to replace it resulting in more unnecessary pain for Lu.
So our current nurse decided there was no way the tube could withstand another feeding without completely busting. So she pulled the sucker out. Soon after the docs came in and we discussed our plan for the day. We decided to leave the tube out and give Lucy a 12 hour window to make up her mind on eating. If she didn't have a decent amount of liquids, via boob, bottle, or otherwise, they would replace the feeding tube. No pressure.
So at 1 I gave it another shot. Still rejected. No boob, no bottle. Every time I would try she would arch her back and scream at me. The lactation consultant came in to observe and she was baffled, as was the doctor who came to check on our progress. We decided to try "real food." At 4:30, after attempting to feed Lu ice cream, a popsicle, carrots, peaches, & rice cereal and her being completely disgusted by it, I thought I'd give the boob one last shot.
I laid Lu down next to me ready to be disappointed. I laid there and to my surprise she turned her body and latched on. I stopped breathing. I didn't move. Tony didn't move. I laid there with a smile on my insides for 5 solid minutes. You can't even begin to imagine the joy I felt at that moment.
She continued to thrive the rest of the evening... 7:30, 5 more minutes of nursing. And then to my total surprise she was hungry again at 8:30!
We just spoke to the nurse and she thinks if Lucy continues to eat throughout the night and has some good solid diapers in the morning, after we see the doctors, we will most likely be able to go home. I am beyond excited. I just praying that she'll continue to eat so we can all go home. I am so grateful for all of your kind words of encouragement today. I really needed it. And I think Lucy needed it too. ;)
Lu is officially off oxygen, they even took the tube off her face! She is no longer hooked up to monitors that were watching her blood oxygen saturation, breaths per minute, & heart rate. The nurse took out her IV this morning! So no more taped head. :)
The only toob (I keep writing toob instead of tube because I have boob on the mind) left is the one that feeds her. She is being an awful stinkerton (as we say in our house) and refusing the boob as well as the bottle. It is officially the ONLY thing keeping us from going home. If she would only eat. I am praising Jesus for healing her lungs but at the same time am feeling completely rejected by Lucy.
But it's Wednesday, and since it's Hump Day I'm really hoping she'll get over it and we can go home and see our other babies whom I miss like crazy!
Tuesday, February 22, 2011
From the moment she woke up at 7:30am Lucy has been a different baby. She's all smiles, so talkative and has been playing with her toes and trying to chew on every wire that she's hooked up to.
The doctors decided to stop feeding her through her tube to try and encourage her to nurse or take a bottle. All day, every 3 hours I've offered and she's given me the shaft. I have to say, it's extremely discouraging when every time I offer, I am rejected. Then I'll pump and offer a bottle and she'll just scream at it. So when she doesn't take the milk orally, they give it to her through the tube in her nose.
She's doing so well other than the eating issue though. So well that we're being moved downstairs to the general population! If only she would eat... Doctors say it's the only thing still keeping us here. So I keep praying that one of these times she'll decide she loves me again.
I just HAD to make her a new headband seeing as her IV kinked in the middle of the night and they had to cut her fashionable hospital grade one off.
Monday, February 21, 2011
Tony brought a cold home from his latest trip to California, surprise surprise and we all got it.
Monday the 13th: Spencer & Lucy developed fevers and weren't feeling so hot, so I took them to the doctor. Lo & behold, Spencer had pneumonia for the 9th time. Ugh. Antibiotics. Doc also thought Lu might have a sinus infection since she had a fever, but no ear infection, lung infection, etc. Antibiotics.
Tuesday the 14th: Lu woke up at 7am and puked up everything she had nursed that night. She refused to nurse for nearly 12 hours. Since she doesn't really dig the solid foods, I was starting to worry since nursing is her main source of nutrients. That night she nursed maybe once.
Wednesday the 15th: All morning Lu decided she had given up the boob. She now had raspy breathing and looked like she was working pretty hard at it. I decided it was time to go back to the doctor. If she had a bacterial infection and was on antibiotics for 48 hours, she should be feeling better by now. We got to the doc and he gave her a breathing treatment because she sounded wheezy. After the treatment he checked her saturation levels (how much oxygen is actually being absorbed by the body) and they were 89%. He said she had a pretty bad case of bronchiolitis and he sent us straight to Salem Hospital to have her admitted. After much craziness... juggling 3 kids, waiting for Tony to get home from work in Hillsboro, pack me a bag and meet us there... She was put on a liter of oxygen (the tubes through her nose) and given an albuterol breathing treatment. Tony came and took the kids home after my mom & brother came and sat with me while we waited. As soon as he left they decided she was wickedly dehydrated and started to try and start an IV. After 4 failed attempts, they finally found one in the crook of her elbow.
Meltdown #1 for Mama.
I stayed with her all night as they gave her an epinephrine breathing treatment every 2 hours because she wasn't responding to albuterol.
Thursday the 16th: No change.
Friday the 17th: Lucy worked down to nearly no oxygen and epinephrine every 4 hours by night time. They started her on intravenous steroids in case there was an underlying asthma factor.
Saturday the 18th: 3 am, I wake up to find 3 nurses and the respiratory therapist in our room hovering over Lucy. I'm slightly drugged (took some benadryl earlier because I find it extremely hard to sleep in hospitals), and the nurse in charge starts talking to me in a rather, "I'm trying to stay calm" voice. She tells me that Lucy is having a really hard time breathing. The amount of breaths a baby her age should take per minute is around 40-50. She kept jumping up to 85 and have to work really hard to keep up. They were giving her breathing treatments every hour and her oxygen was turned back up to 1.75 liters. The vein where her IV was had collapsed and they were trying to find another site. They finally found a vein in her foot and got an IV running. After 5 minutes, it too collapsed. They called in the NICU nurses to come find a new vein since they couldn't. They finally found one and inserted an IV in her head.
Meltdown #2 for Mama.
The nurse said if she didn't turn around soon they would have to send us to Portland because she was working too hard and was so tired that she might just give up and stop breathing and they didn't have what she needed if that were to happen.
Meltdown #3 for Mama.
I called Tony at 4am to come in because I was having a hard time holding it together. My amazing neighbor stayed at our house so he could come in. Meanwhile, they called the doctor and she decided to have her do 3 hour long breathing treatments of albuterol since the epinephrine was no longer working for her. By the time she was done her heart rate was over 200 beats per minute and she was shaking from all of the drugs in her system. They gave her another dose of steroids. She finally relaxed and it looked like the worst was over. They continued breathing treatments every hour throughout the day and into the night.
Sunday: 3 am. After maybe an hour of sleep, I wake up to find the charge nurse rocking my baby and giving her a breathing treatment. (Not normal since it's usually the RT that does it and the treatments are only 5-10 minutes long). She says she's worried. Her saturation levels dropped again and she was back on albuterol and the doctor said to do it straight for 2 hours to try and open up her airways. Her breathing is shallow and 84 breathes per minute.
Mama meltdown #4
2 respiratory therapists and my nurse all tell me that they can no longer take care of Lu in the way she needs and that she should go to Portland. The doctor comes in later that morning and we all decide it's in her best interest to get her transferred up to Doernbechers.
Mama meltdown #5
My big brother comes up and sits with me & while Tony heads home to pack some bags and we wait for the ambulance. "This is what you want" he tells me. That she is going somewhere where she'll get the best possible care. It takes some time, but he convinces me this is a very good thing.
The Panda transport team arrives later that afternoon and we make our way up to OHSU.
After getting hooked back up to all of her monitors, oxygen and settling in, a team of 2 doctors, 2 med students, an RT and a nurse came and assessed Lu. She received one albuterol treatment and they decided since she didn't really respond to it, that they weren't going to continue treating her with it. They took her off oxygen to see how she would respond. The nurses, RTs and doctors continued checking on her throughout the night. Her sats dropped to 82 at one point, but came back up after upping her oxygen to 1 liter. By the morning she had worked her way back down to .25 liters. But never once did her heart rate go over 130. Never once did her breathing rate go over 55.
Today: This morning 3 doctors, 6 med students, a nurse, the RT, and the dietician all came in and assessed Lucy. I felt so at ease. I felt like she was special. Important. That they were here to do everything they could to take care of my baby girl. They've been here all day. The entire time we were in Salem, the nurses had to call the doctor to figure out what to do. Whereas here, there's a doctor available at the hospital, all the time. Very reassuring.
Since being transferred to Doernbechers Lucy has done so much better. After speaking with all of the doctors, nurses, and RTs, they all agreed she should have been transferred here days ago because she was obviously being overdosed and bombarded with drugs that were working against her rather than with her. She's improving so much faster and has even had a few moments where she actually wanted to play!
As of right now she is no longer on oxygen or any breathing treatments! She's still pretty wheezy, but everything else is improving. She currently has a feeding tube placed down her nose where she's being "fed" Mama's milk. The more nutrition she gets, the better she seems to feel. I feel so much more at ease here. It feels less like a crazy stressful situation where people are running around with their heads cut off and more like people are trying to figure out the source of the problem and not just treating the symptoms with drugs that aren't working.
I want to thank each and every one of you for all of your prayers, offers to help, food, coffee, & company. God is good and I have the most amazing friends and family.