The first reason I'm starting this journal is to document my daughter, Lily's battle with RSV. I'm sure once I'm done with that, I'll have more to write. For those of you who don't already know me, here's some background. My name is JaeLynn, Jamie really but I prefer JaeLynn. I'm 24 and the SAHM to two beautiful girls. Taya Violet was born 9-18-01 and Lillian (Lily) Mae was born 3-6-03. I'm married to a wonderful man. Matthew is 27. We live in Ohio but are orginally from Wisconsin. That should be all the important stuff. Let's begin.
Monday, March 31, 2003(Which was the day Lily was due)
Lily was 3 and a half weeks old. She had been coughing and pausing her breathing. So, I decided to take her to the doctor. We had a 1 pm appt. I packed up Lily and Taya and went to the doctor. Matthew met us there. While we were there, the doctor was telling us that if Lily's coughing got worse or she started running a fever over 101 degrees we need to take her to the hospital. I then told him about the pauses in her breathing. Lily was cooperative enought to do it for him. The doctor decided to check her into the hospital for observation because he thought Lily might have apnea. He ordered an aersol treatment while we waited for everything to be set up.
Once we got out of there, Matthew and Taya ran home to pick up some things and Lily and I drove straight to the hospital. I could her coughing in the backseat every once and awhile. I was so scared that she would stop breathing. When we got to the hospital, I waited in the lobby area until Matthew and Taya got there. Then, we all headed up to the Peds unit to get checked in. They started to examine Lily and swabbed her for RSV. That came back positive. I was actually relieved that it was RSV and not apnea.
We got settled into a room and Lily got hooked up to a moniter that measured her hb, respitory rate and pulse ox (the amount of oxygen in her blood). The moniters were very annoying because they would alarm a lot if Lily would move. Matthew and Taya headed back home to get some stuff for me to be able to spend the night with Lily. Lily was also getting the aersol treatments every 4 hours.
That night everything was okay. Lily was nursing like normal. She was still coughing but everything seemed okay. One of the nurses even told me that a lot of newborns pause their breathing for short periods of time. And what I thought was a pause, was her breathing really shallowly.
The next morning, Dr. Hadaad decided to keep her another 24 hours to continue monitering her. After a night of sleeping on a hospital cot and having to actually get up to nurse Lily, I was not to happy but knew that we had to do what was best for Lily.
Tuesday was more of the same. Alarms going off and Lily being fine, breathing treatments evey 4 hours. Extreme boredom. Matthew didn't want to bring Taya up to the hospital and I didn't have a lot to do. They finally came up about 4. I took a shower and then nursed Lily. When I was nursing Lily, dh and Taya went to the playroom. When I was done nursing Lily, I went and got them so we could go to dinner. Matthew told me how much it scared him to see Lily in the hospital. I'm like she's fine and will probably come home tomorrow.
We went to dinner at Olive Garden which is one of my favorite restaurants. Then, Matthew and Taya just dropped me off and went back home. That night, I could not get Lily to eat. Finally about midnight I got her to nurse but then she coughed and puked everything back up. The nurse decided to bring her to the nurses' station so they could moniter her better and they would just give her formala. I was so tired and frustrated that I let them. I slept and about 7 they brought Lily back in by me. I fell back asleep.
Wednesday April 2, 2003-I wake up to the nurse and doctor in Lily's room. Lily was having frequent periods of apnea. They decide to put her on an iv and oxygen. I call Matthew and now I'm really scared. A little while later the doctor comes in and tells me that they are monitering Lily to make sure she won't need to be intubated (put on a respirator). They wanted to transfer her to Rainbow Babies and Childrens Hospital in downtown Cleveland and put her in the PICU. I call Matthew back and he gets Taya up and heads up to Southwest as quickly as possible. I ask the nurse how long it'll take them to come get Lily and her reply was they should be here within an hour but at all depends if they come by ambulance or Life Flight. At this point, I have Lily in my arms and I'm scared to death.
The Critical Care Transfer Team show up and start preparing Lily for transfer. She is continuing to have apneic periods. The nurse wants to get going and Matthew still hasn't arrived. So, one of the paramedics is giving me directions so we can get to the hospital. I decided to wait for Matthew because I would have had to ride up front in the ambulance and Matthew wouldn't have known how to get to the hospital.
Matthew calls from the parking lot saying he's here, I tell him to come on up to help me carry everything down to the care. They tell me they are taking Lily and not to attempt to follow them to the hospital because they will be going lights and sirens. They wheel Lily out and the last thing I overhear is the nurse saying "Have the epi ready."
Matthew and Taya come up and the three of us go down to the parking lot and get in the car. The ambulance is just pulling out as we're walking to the car and I will never hear ambulance sirens the same again. We found the hospital and then the PICU.
You have to call in to get let in to the PICU. We call and they say someone will come get you when Lily is stabilized. At this point, I'm terrified. After awhile, they let us in and Matthew goes in first because we don't want to take Taya into tht PICU. He comes back and tells me that they are giving her a caffenine treatment to see if that will help her with the apnea but that they might be putting her on a respirator. I go in and see Lily for a little bit and then, we go down to the cafeteria to get some lunch while we wait to see if they are going to have to intubate her.
Matthew goes in first again and when he comes back, he tells me that they are going to intubate her. I go in and hold her for a little while and then we left the hospital. We couldn't be in there while they intubated her. And we needed a break. So, we went home and started the grim task of telling everyone that Lily is in the PICU and will be on a respirator.
Julie, my MIL, says that she will come that weekend and help us out. About 20 minutes later, Phil, my FIL, calls and says that Julie is on her way. Matthew goes into work and they say you can have as much personal time as you need. Taya and I take a nap.
Bout 5 pm I call up to the PICU to see how Lily is doing. After we left, the caffenine started working but just a couple of minutes before I called, they intubabed her. So, Matthew and I decide to wait until Julie arrives and then we will go see Lily together.
About 10 pm, Julie (MIL) finally shows up. Soon after, Matthew and I head up to the hospital. We took our sweet time getting to the PICU, then we found a vending machine and got some drinks. Finally, we go in to see our baby girl with a breathing tube. It actually wasn't all that bad. The nurse comes over and explains everything for us. She shows us Lily's iv, which is a femeral line. It's stitched into her upper thigh. That was actually worse than seeing the breathing tube. She also has a feeding tube up her nose. Matthew and I touch Lily and talk to her for awhile.
Then, we play cards for awhile and debate whether or not one of us should spend the night. We couldn't sleep by her and they weren't sure if there would be any sleep rooms open. So, a little after midnight, we head home. When we get home, Julie is still awake and Taya had just fallen asleep shortly before we got home. So, we collapse into bed. It's very emotionally draining exeperience.
Thursday April 3, 2003
We get up fairly late and call for an update on Lily. We then get ready to head up to the hospital and leave Taya with Julie. When we get to the hospital, a very nice patient advocate tells us how to get a parking pass. We go and take care of that. Matthew and I witness a treatment called pd or clapping treatment. A respirtory therapist takes a soft rubber device and claps it on her chest. It's meant to break up all the mucus her lungs are secreting. Matthew called it throwing our daughter a beating. Got to find humor in what you can. After they would do that, they would have to suction the mucus out of Lily. That was pretty scary to watch.
We spent most of the day up there. I pumped some breast milk for Lily. We left about 7 to get home in time to watch Friends, etc. When I got home, I just wanted to zone out and watch tv. I didn't have it in me to paly with Taya or make small talk with Julie. I was so emotionally drained. Watched all the NBC shows, called for a Lily update and went to bed.
I forgot to mention that happened on Thursday. A doctor was doing a study about the comfort levels on babies on respirators. We agreed to let Lily participate. They hooked her up to an EEG machine and videotaped her. The point was to see if there were brain wave patterns that would tell the doctors when babies need sedation. It took forever to get the glue from the EEG leads out of her hair.
Friday April 4, 2003
It was pretty much the same as the day before. Matthew and I went up to the hospital to spend time with Lily. We stayed up there until about 8 pm and went home to spend some time with Taya. Matthew's dad was planning on coming the next day. He hadn't seen Lily yet. I'm sure that this was not the way he wanted to see her for the first time.
Saturday April 5, 2003
Phil (Matthew's dad) arrived in the morning. So, we all got ready to go up to the hospital. Julie, Taya and I went in Julie's car and Phil and Matthew drove up in our car. We didn't want to bring Taya into the PICU. So, Matthew and I went in first to see how Lily was doing. The, Matthew went out and got Phil. He commented on how resposive she was. After awhile, he and Matthew went out to let Julie come in. Phil was crying on the way out. Julie came in and we talked. She watched the nurses suction Lily. We then decided to go get some lunch. We went to a very good Italian restaurant called Boca di Bepo. It's a family style restaurant and so yummy.
After lunch, Phil and Julie took Taya back to our apartment and Matthew and I went back to the hospital. We stayed up there until about 8 at night. Lily was doing better and they decided to start weaning her off the respirator.
By the time I woke up, Phil had already left to go back home. Matthew and I head up to the hospital to see Lily. She is having a great day. They are continuing to wean her off the vent. She does great at every setting. I get to hold her for the first time since Wednesday. The goal is to take the tube out the next day. Matthew and I are very excited. We could have our baby back home by the end of the week. We head home that night feeling very good. That night after Taya and Matthew head to bed, Julie lays into me. She yells at me for taking the girls to the Rock N Roll Hall of Fame and for taking them back to Wisconsin. She makes me feel like it's all my fault that Lily is sick. I go into the bedroom and tell Matthew all about it and cry. He tells me that it is not my fault that Lily is sick. What had really upset me is that I was in such a good mood and she took that away from me.
Monday April 6, 2003
When Matthew gets up, he calls for a Lily update and they have stopped her feeds. That means they are planning on taking the tube out. She has to have an empty tummy so she doesn't throw up when they take the tube out. We get up to the hospital by 10 am because that's about the time they are planning on taking the tube out. We get up the her cubicle and the doctors tell us that they are going to wait a couple of hours because she is still producing a lot of mucus. About 2 pm, some female doctor we have never seen before comes over to tell us that we are not going to be taking the tube out. Matthew says some stuff about how they got our hopes up for no reason and the lack of consistancy in care. We had gotten several different stories about how long she would be on the respirator and other things. Lily had also had a different nurse at every shift every day. The doctor just stands there. Matthew and I want her to just leave. I want to cry. Finally, she leaves and I break down. This came as a huge blow. Matthew and I go to McDonald's to get some lunch and we are both pissed. We have to make several calls telling people that Lily is still on the respirator. That was very hard too. We go home in the evening and I make it a point not to be alone with Julie.
We all get up and I call to get an update on Lily. She has been having more apneas and they turned up the respirator. Not a good thing. Julie heads for home and Matthew, Taya and I go up to the hospital. We all go into to check on Lily. I cover up the tube with Lily's blanket so Taya can't see it. It's the first time Taya has seen her sister in a week. We talk to the nurse about Lily. Then, I head out to the waiting room with Taya and Matthew waits to talk to a doctor. Then, I go in and Matthew plays with Taya. We find out that Lily isn't doing too well. She has to stay on higher settings. Matthew and I decide that we can't take sitting in the hospital. So, we go to the mall. We grab some lunch and buy some clothes for the girls as their Easter presents.
When we get home, my mom calls. She says she is heading to Ohio the next morning. She calls back later to find out the best way to get around Chicago. It's about 9 pm and Matthew says the best way is to leave now. She says she will call the next day before she leaves. I call for another update on Lily before bed. She is still on high settings. We go to bed and I am so excited that my mom will be here the next day.
Wednesday April 8,2003
Matthew heads into work to make sure everything is alright. He's starting to feel really guilty about the amount of work he's missing. He calls about 11 and my mom still hasn't called to say she was about to leave. I've called her house a couple of times but no answer. Finally, right before noon, she calls and says she's in Indiana. She ended up leaving Tuesday night. Matthew arrives home and we head up to the hospital. We don't stay very long again. We take turns staying with Taya in the waiting room. We are told that the cultured Lily's secretions and it ends up that she has pneumonia and they started her on an antibotic. We get back home about 5 so that we will be there when my mom gets there.
She arrives and has my little sister with her. I am so excited to see Katie and my mom. That night I chat with the Treats and have a much needed beer. I talk to my mom and sister for awhile and then we head to bed after a Lily update.
We leave Taya with my mom and Katie while we go to the hospital. It feels so good after the past couple of days of not spending much time with Lily. When we get to the hospital, there is a not saying that they should try weaning her off the vent. They do that throughout the day and she does well. They are taking about taking her off the vent tomorrow but we are trying not to get our hopes up. I get to hold her for awhile. We go back home and spend some time with my mom and sister. They had a great time with Taya. We call for a Lily update and she is still doing well and we go to bed.
Friday April 10, 2003
When we call for a Lily update, they have stopped her feeds. This means they may take her off of the vent today. We head up to the hospital. We are trying not to get excited in case they do not extubate her today but it's hard. It's been over a week since they put her on the vent. I've held her a twice. Well, when we get to the hospital there is a sign saying to extubate her today. The doctor comes by and say that we are going to wait until this afternoon. It's starting to feel a lot like Monday. Well, Matthew and I play cribbage and wait it out. Finally, about 2:30 they decide to pull the tube. We aren't really supposed to be there when they do it but we do. It's so great to hear her hoarse little cry. As soon as they are done with all of that, Matthew holds her while I start calling people. We take turns holding her for a couple of hours and then head home. We want to go to dinner to celebrate.
Taya had a good time with my mom and sister. They took her to the playground. I'm starting to realize how much I've missed with her. Soon Lily will be out of the hospital and I can be a good mother to them both again.
When we had arrived home from the hospital there was a package from the Treats. It totally added to the happiness of the day. I am so fortunate to be a part of such a great group of women.
We decide to go to Wal-Mart after dinner and do some shopping. My mom buys some clothes for Taya and Lily and a Pooh bear for Taya. All in all, it was a good day. Now, it's only a matter of a couple of days until my baby will be home again.
Saturday April 11, 2003
Get up and call about Lily. I'm kind of apprehensive because I know that sometimes they have to put the tube back in. But she's doing great! Matthew is talking about going to see a movie that night. I really don't want to because I feel like I've been ignoring Taya enough. Matthew decides to stay home and take Taya swimming in the afternoon. So, my mom and I head up to the hospital. Lily is still in the PICU but they are counting it as a floor day.
When we get up to the PICU, Lily isn't in the cubicle she had been. They had moved her to a little room they have. I go back there and we spend some time with her. I want to try to nurse her again because it's been awhile since she nursed. The nurse had just fed her so I have to wait. Mom and I talk while I hold Lily. After awhile, we go downstairs so my mom can have a cigarette and we can grab a snack.
We come back up and they moved her again. Lily was hungry so I tried to nurse her. While I'm nursing, Matthew calls to chew me out. He and my sister had made dinner and it was ready. We decide not to go to the movie.
So, after I'm done nursing and burping Lily, mom and I head home. Dinner is waiting. Matthew had even picked up a bottle of wine. So, we are eating and drinking and having a great time. After the bottle of wine is gone, we all decide that we need to continue this good buzz. So, my mom and I walk over to this drive thru liquor store and get more alcohol. We spend the rest of the night drinking, playing games, and talking until 2 in the morning. It was exactly what I needed after all the stress I've been under.
So, we all get up the next morning a little hung over. I call up to the hospital to get an update on Lily. She has been moved up to the regular Peds unit. Mom, Katie, Matthew, Taya and I all head up to the hospital. We hang out in Lily's room. She is doing great. And the room is beautiful. Taya and Katie keep running between the playroom on the floor and Lily's room. We are told that Lily should be coming home the next day and I'm so excited to hear that. I debate whether or not to stay the night and decide not to. I didn't bring clothes with and it's a 40 minute one way trip back home. Plus, Mom and Katie are leaving the next day. After a couple of hours of hanging around Lily's room, we head home. Grab some subs for dinner and hang out.
Matthew and Katie go see a movie while my Mom and I talk. Call to check on Lily before going to bed.
Monday April 13, 2003
I wake up and call to check on Lily. Still sounding like she should be able to come home. I want to get to the hospital as soon as possible and bring her home. Plus, I'm feeling guilty for not staying with her. My mom and Katie want to leave in the late afternoon so Matthew and I head up to the hospital.
When we get there, Lily is screaming and all uncovered. I pick her up and nurse her. After awhile the nurse comes in and gives us an update. She tells us that Lily won't be released because she's still on oral antibotics. She then tells us that the doctor was going to remove her femeral iv. When the nurse came back to the room, Lily's iv was out and the doctor was asking who had done it. So, no one knew who had taken out an iv that was in a major blood vessel!
I tell the nurse that we want to take Lily home todat and to please get a doctor. The intern comes in and says that Lily didn't eat enough the day before and that's why she had to stay. I tell her that I breastfeed Lily and she would be fed on demand if she came home. The intern tries to talk me into spending the night. I tell her that's not an option because I have another child at home. She goes to get the resident. Matthew goes to the car to get Lily's car seat because it's become clear that I'm not leaving the hospital without my daughter.
The resident comes in and tells me that they need to moniter Lily for another day and that's why she needs to stay. I tell her that as far as I knew Lily's pulse ox level has not dropped below 95% since she was taken off the respirator. I tell her that I'm taking my baby home even if I have to sign her out AMA. They go to talk to the fellow. (The one who didn't remove her iv). While we are waiting, the nurse comes back and I tell her what is going on. She agrees with me that there really isn't a reason for Lily not to be released that day.
After awhile, the intern comes back in and says Lily can leave that day but can she stay until 5 pm. I say no because I don't want to give them a chance to invent something to make her stay and I know my mom would like to leave by 4 or 5. So, they get the paperwork ready and get me to agree to a follow up appt. with Lily's regular doctor. So, it's about 2 pm. At 3, they bring in the paperwork for us to sign. There is nothing saying we are releasing her AMA. We take Lily home. My mom and Katie leave and get home early Tuesday morning. Matthew returns to work on Wednesday.
So, that was 2 months ago. Seems like forever. Lily is now a happy healthy 3 month old. We do have some issues with reflux and crying but nothing too bad. When we discussed that last day at the hospital with some friends they thought the hospital was just trying to get our insurance to pay for another day. I'm glad I didn' t give in. I'm usually the one that sits quietly while Matthew speaks up but this was a very good role reversal. I'm glad I stood up for my daughter. Lily needed to be back home. Thanks for reading about our ordeal. And for praying while she was in the hospital.