We were completely discharged at 6pm.
We went through the monitor training. It's pretty easy, really...but a bit overwhelming. Especially for other people. But we'll get through.
Already Lily is off of her schedule. She was supposed to eat at 8 but played with her bottle because she was mostly asleep. So she ate at 10. We just put her down and she's lying there awake, but amazed by her crib aquarium.
Her monitor just went off. Derick was right there, and I ran it. She stopped breathing, but fixed herself. Whew! I'm a wreck...
I'm afraid to leave her in there by herself. It's not like anything could happen, but I'm afraid. I just want to hold her for the rest of my life. She has the hospital monitor and a sound monitor, but I still can't help myself. It almost brings me to the point of an anxiety attack and I have to take several deep breaths to control myself! Stupid, I know...
So anyway, she's home and happy! I'll post some pictures tomorrow when I get a chance. My mom is coming over in the morning and Lilo went to my aunts. She was doing alright, but really curious and it made a stressful situation more stressful. So she was happy to go in the car for a while. I have an appointment with the doctor tomorrow to discuss my PPD. I haven't seen a difference in the meds yet, but hopefully soon. Or at least having her home will help the situation.
Wednesday, August 27, 2008
We were completely discharged at 6pm.
Posted by Becky at 11:09 PM
Tuesday, August 26, 2008
Tomorrow is the day. We waited all afternoon to see the doctor, and when he was about to leave for his haircut the nurse interupted quickly to ask why exactly Lily was still there. Have you had monitor training? Of course not! No one told us to take monitor training. That's why she's still here. Get the training tomorrow afternoon and she can come home tomorrow night.
If we hadn't asked, how the hell long would she have been there?!
So tonight is the last night alone, by ourselves, and with little confusion and lots of stress...
If you had asked me one year ago today if I would ever have a living child, I would have bet you a million dollars that I wouldn't. If you had asked 2 months ago if we'd have a baby in the NICU, I would have bet money on that too. But for whatever reason we've been given this incredible opportunity to have a beautiful little girl and for that I can't be thankful enough.
Yet there is still this pain in my heart...a missing link in our family...and deffinately empty space in our pictures. Other people can't see it, but for us it's there and it's impossible to ignore. Not a day passes that I don't think of all my children. Understandably, when I see little boys in the NICU my heart skips a little bit. Elija, today for example, stared at me for an hour at least. His eyes were wide open, and I wondered if he knew. Maybe he could see something that I couldn't see. Or maybe he wondered why his parents didn't come and visit...a topic that seriously distresses me. The pain is absolutely magnified by those who don't visit their children, or those who can't care for them and it's visible. Last week they actually had to call CPS because someone didn't pick up their child. Such incredibly beautiful, strong children...how could someone NOT pick them up?!
So tonight, on the eve of picking up my daughter and finally bringing her home, I can't help but think about my boys and your children. The one's that should be here, but aren't. I miss them...all of them. Your's and mine. But my heart and my home are finally filled with a smile that I can't resist. A joy and a strange sadness at the same time. But those are feelings that I hope you all can feel someday. Fill your homes with love and have a lot of patience. Good things happen when we are a little patient. Coming from me, the most impatient person on Earth, that is saying a lot!
Lots of love to you all and I can't thank you enough for your strength, prayers, and love. Lily has no idea how many people in this world love her already.
Posted by Becky at 11:04 PM
Friday, August 22, 2008
I called this morning to check on Lily. They took her feeding tube out, and she's doing wonderfully. Except she had an 3 apnea episodes last night. All right after her eating, and all due to reflux. When there is an apnea episode, they need another 5 days before they can go home. So now we're looking at Wednesday.
As much as I said I wasn't going to get my hopes up, I did. And I'm devestated.
I don't want her to have a problem at home. It scares me to think that she might, but I also want her home and it's selfish of me...but that's how I feel. I keep trying to rationalize things in my mind. Derick knows infant CPR, we have a SIDS monitor, and they could send her home with a heart monitor.
So I called the nurse back, posed my questions and she said that Lily's apnea isn't severe. It's not like other babies and she would be better off waiting a few days than even going on a heart monitor. They started adding cereal to her milk to thicken it a little and she seems to be doing well there. When I fed her tonight, they started her on a new nipple and it was coming way to fast. She kept choking and actually stopped breathing and turned blue on me. I was terrified and I wanted to hand her over and never touch her again. I thought I killed her. But I patted her back, and rubbed her chest and she started again. It was enough to completely convince me that she needed some more time. Life does that sometimes. So we switched her nipple and tomorrow I'm going to bring in our bottles with a preemie nipple and see how she does with those. Hopefully that will help with the flow. We just can't get it right...
I was almost going to give up on pumping and breast feeding, but I talked to the PA tonight and she told me to give it some more time. So we tried a little, and Lily didn't really know what to do. It takes time, they tell me. So we're going to give it more time. I'm nervous though that she chokes more on the breast milk than the formula. It almost makes me want to switch to all formula just for that reason. But then I feel like I'm letting both of us down and I'm just not ready to give up yet.
So that's where we are now. Sorry to get your hopes up! Stay tuned...
Posted by Becky at 10:10 PM
We got the news today.
As we were about to leave the house for my mom's, my phone rang but I missed it. It was the hospital. My heart sank, and I dialed the voicemail to listen to the message. As it was ringing, Derick's phone rang...the hospital. He handed me the phone quickly, and I was starting to get upset.
Hello, Mrs. G? This is so and so from the hospital. I'm the discharge nurse.
I was calling to go over some things. Are you comfortable with a home nurse coming to check her weight and growth? Also, have they given you a date for her to come home? I'm calling because I hear it's going to be this weekend.
The discharge nurse SAYS this weekend?!
We'll go over everything before you leave, but be sure to bring her carseat tomorrow for her carseat check. I'll have some handouts regarding the nurse at her bedside waiting for you when you get there tonight.
We don't have an absolute date and Derick begged me not to get my hopes up. So for now, I'm hoping that she'll be home by next Wednesday. We'll be pleasantly suprised if it's before that.
Posted by Becky at 12:45 AM
Wednesday, August 20, 2008
Becky can give her the bottle tonight, Derick says. He thrusts her into my arms. The nurse warms her bottle. I snuggle with her for a moment, and the bottle is done.
She's trying to suck on her shoulder's. She's hungry and lets out a wail louder than I've ever heard from her. I take the bottle, she opens her mouth and begins to suck.
Before I know it, the monitor goes off and her heart rate is dropping. I see the numbers drop, but it takes me a moment for it to register. Pat her on the back! You have to watch her, Becky! Derick yells at me. Up they go, up, up, and up. She's ok. For now.
She does this because she drinks to fast and doesn't take time to swallow. All baby's do it, they say, It's just that they aren't hooked up to monitors to see it.
I start to sob silently by her bedside.
What is wrong with me that I can't react fast enough when my baby chokes? What if she dies when she gets home because of me? What if I kill her?
I'm scared to feed her. Scared to hold her. Terrified of bringing her home.
Please God, don't let her die too.
She seems to have these 'episodes' more with breast milk than formula. She's getting about half and half through the day, each fortified with extra calories. Does she like the formula better? Is it because the breast milk is thinner and comes out of the nipple faster? I don't know where to find the answers. I want desperately to nurse her, but it's not as easy as you would think considering there isn't anyone to teach you when it's your time. They make it look so easy...the lactation consultant is on vacation this week and Lily will be home soon. What if there is no time to learn?
Just when I think the PPD has subsided a little, it hits me like a truck...
Posted by Becky at 11:54 PM
Friday, August 15, 2008
I've finally got a few moments to myself and really reflect on her birth. I'm somewhat saddened that I don't remember it the way I would like to. I was in such shock at the moment that I didn't have time to reflect on what was actually happening. It will catch up with me in time, I'm sure, but right now it seems like such a blur.
Sunday August 3rd, I started to feel bad. Uncomfortable. Not myself. I thought I overdid it. Maybe I was constipated. Perhaps it was gas that I just couldn't pass. By the time night fell, I was uncomfortable tossing and turning in my sleep. I could not find a place to settle. By Monday morning, I was tired and restless. I still couldn't find comfort. I went to the bathroom. Not constipated. I took some Gas-X, no gas. Still uncomfortable. I laid around most of the day, but went out to dinner with my parents and my brother and sister-in-law. At dinner, I started to feel really bad. I thought it was just pressure on my TAC. The doctors told me to expect that. So I took some Tylenol and hoped that it would help things a little bit.
By the time I got in the car, I was very uncomfortable. With everything going on in my family, I didn't want to worry my dad any especially if it was unwarranted. So my mom and I dropped him off and I told her that I wasn't feeling great. I called the doctor and he told me to come in.
When we got there, they hooked me up to all the monitors. They said I wasn't contracting. The residents did a pelvic exam and said that my cervix was closed. They did an FFN test, and said the results would be back in a few hours. Then they did an vag u/s. The resident was silent. She said that she couldn't find my cervix on the u/s screen. Then she said, "Oh, it measures 2.5cm." So I told her that it was 1cm shorter than what it's been my whole pregnancy. Well, she said, this machine isn't very accurate. It's just pressure, you can go home.
On the way home, the pain started to increase. Derick was waiting for me. I ran inside to use the bathroom and I was bleeding. I passed what I now know was part of my mucous plug. Derick saw me in the bathroom and saw the blood. He started to put his shoes on and said that we were going back.
So we got back in the car...
By the time we got to the hospital, my contractions were 3-4 minutes apart and the pain was so bad that I couldn't stand. They took me right up to labor and delivery and into triage. My mom insisted that the doctor come in and that we didn't want to see a resident. They tried to find her heartbeat but they couldn't get it on the monitor so they brought in an u/s machine. Just like with Dylan. I started to freak out, panick, cry...I thought we lost her too. It was just like with Dylan. Then they found it. She was just moving to quick to catch it! Before we knew it, the doctor had come in and did an internal. He told the nurse that he could feel my cerclage.
They started terbutiline and then magnesium. They took my contractions 8-10 minutes apart with irregular strength. But they never stopped.
I finally sent everyone home aroud 6am. I was still in triage, but there was nothing that they could do and I figured they might as well get some sleep. It was going to be a busy day.
Around 8:30 am they took me to see the Peri. They put me in a wheelchair, and we went over. I got onto the table, they did the u/s and estimated her to weigh 4lbs 7oz and she looked great. She was tollerating everything well. The tech started the vaginal u/s and the doctor was speechless. Even I've never seen anything like it! My cervix was completely gone. It was just the TAC holding everything in. I thought that her foot had slipped through, but it was the amniotic sac coming through. I have no idea why or how it didn't break, but the TAC held it all where it could...like a dam. I asked about NICU because at that moment I knew that she was going to be born and the Peri said that they had one bed available. I asked him if he could put our name on it and he said, "Consider it done!" My mom walked into the room the moment he told the nurses to book the OR. I sat up, trying to get back in the wheelchair, and he wouldn't let me off the bed. So they wheeled me back to L&D.
I called Derick on the way and I told him he needed to get here now. He asked if he could take a shower, and the nurses said, "There is no time for a shower!" But he met us as soon as the doctor did. He got all ready in his scrubs, the OR was ready, and they wheeled us off.
The anistesiologist started the Epi and Derick came in shortly after that. They started cutting at 10:55 am and Lily was born at 11:03am. It was amazing. She didn't cry at first, but she peed on the doctor. What a suprise for a child of mine! They whisked her away and Derick followed taking pictures. Before they left for NICU they brought her to me for a kiss, and she was gone. She was perfect.
The doctor told me that when they took Lily out they heard a snap or a pop. She said that it was probably her clavical that maybe broke or fractured. By the time we got to NICU to see her, they had already done x-rays but didn't find anything.
I asked for a breast pump right away because I wanted to start immediately. The nurses weren't very accomodating for NICU mom's that wanted to bf. I was suprised, and somewhat dissapointed. They just came and dropped everything off with no instruction or anything. Finally I got a nurse that was helpful and helped with the horrible soreness. By the time she got to me the next day, I had blisters and was bleeding. It was terrible. Thank God that is over now!
The next day we headed to NICU. My brother and sister in law were with us when the nurse noticed Lily's arm. She was diagnosed with something called Erb's Palsey. She has no feeling from her shoulder to her elbow and cannot move her shoulder. She can move her elbow, wrist, and fingers on that hand but it's just not as strong. There is a chance she can grow out of it because nerve's regenerate themselves, but she could require surgery. We've since found a specialist at Shriners Children's Hospital in Philadelphia and will be taking her there regardless. We won't know much until she starts to develop a little and use it. Derick still has a little bit of denial surrounding it and I've been researching like crazy. It's typical during a vaginal birth and shoulder distocia, but not with a c-section and a tiny baby.
I'm suffering a bit from PPD. The circumstances are just not what I thought they would be. My head knows that the situations are different, but my heart still says that we left the hospital without a baby AGAIN. So I'm having a really hard time with that. The doctor gave me something to help, and he set an appointment for the end of the month to go over everything. I told him about the Erb's. He wasn't the doctor that delivered, but he is my doctor and I trust him. His mouth fell open, and he kind of stuttered "But she was tiny...and a c-section..."
Hopefully we'll have more answers then...
So that's Lily's birth story. It's not perfect, but she is. If anyone knows anything about Erb's, I'd love to hear what you think. I also want to say that my TAC did not fail. So if anyone is facing that, that is not what happened. According to the doctors now, it was straight PTL. I was just unlucky.
Posted by Becky at 10:54 PM
Tuesday, August 12, 2008
My aunt lost her battle with cancer early Monday morning. She passed away at home, and from what I know, in her sleep. She had fierce determination, and even showed it as she was slipping away. We're hanging in there...but it's hard.
Lily is doing very well. She amazes me every single time that I see her. Today she is a week old. I'm exahusted going back and forth to the NICU. We see her in the morning, and then I come back at night to check her weight, give her a bath, hold her while she's eating, and kiss her goodnight. If I can I try to stop by in the afternoon. Yesterday she started sucking on a pacifier, and by the time we got there this morning she was sucking from a bottle. Not a lot, but it's incredible progress. The suck reflex isn't something that typically appears closer to 34 weeks. She might be home sooner than later. Dare I say, the next 2 weeks or so?!
It's been such a strange, emotional week. The Circle of Life. It's how things work, right? My family tries to comfort me by telling me that. I would much rather see Lily in my aunts arms. Lily has the same fire that she displayed. She has that same fierce determination. She's a fighter. Just like my aunt.
I'm thinking now of my aunt's wedding day. I have little recollection. But what I do remember is standing in the driveway, all dressed, looking at the horse-drawn carriage. The decorations were exquisite, the dress was extraordinary, and my aunt was beautiful. I remember when she brought her first born daughter home from the hospital. I watched carefully over the changing table as she changed her diapers. We baked cookies together. Every year, dozens and dozens of cookies. She taught me how to sew. Together we made a blanket for my grandmother when she was dying of cancer. My grandfather gave it back to me after she passed, but it kept her warm when she was undergoing treatment. She was overjoyed when I was pregnant with Dylan, but sadly she backed away after we lost him. She didn't call and I became angry and hurt. I have no doubt that she's found them, and she's holding them in her arms as we speak. I miss her already, but I'm still in shock. The last week has been full of ups and downs, and I'm just...done.
Posted by Becky at 10:58 PM
Sunday, August 10, 2008
Lily Rylan born screaming August 5, 2008. 4lbs 5oz and 17 1/2in long.
It was a stressful week. I'll post her birth story when I can, but she's healthy and happy. She's in NICU and will be there for probably 4 weeks, but she's healthy and alive and that's all that matters. We were finally able to hold her for the first time yesterday, and it was horrible leaving the hospital without her. I can't help but think of the last time we left the hospital empty handed, but it's not the same and I have to remind myself when I have moments of panic. The nurses are so good to her and we can call or visit 24hrs a day.
She's been under lights for jaundice for the past 2 days, but hopefully today she'll be off. Yesterday she was off her CPAP machine and is completely breathing on her own. I've never been so proud. I just want to tell every person that I see. My baby is breathing on her own.
It's going to be a long 4 weeks, but so worth the wait.
Thank you all for your support and your love. I could not have done it without you. And in case you are wondering, my aunt is still holding on. I'm not sure what she's waiting for, but she was able to see a picture of Lily and according to my mother, she smiled for the first time in weeks. Everyone said goodbye to her yesterday, and I'm not sure how her night went but I haven't heard anything yet. It's almost as though Lily had to come early to save the rest of the family from so much heartache.
Posted by Becky at 8:07 AM