Lily turns one!

Lily w/ her aunt melissa, Sleeping while her presents were being opened! 

Novemeber 18, 2011 my daughter turned one years old. My 3lb 9 oz 16 1/2 inch long tiny baby girl has made it through her first year. Even though to strangers she is still a tiny girl, to us she is our big girl, weighing in at over 15 lbs and 25 inches  long.

We threw Lily a party for her birthday on Nov 19, 2011. The turn out was great success. We had family and friends over to celebrate. The theme was animal print. Gray, black, white and pink. I know it sounds tacky but it turned out really well. Lily's cake matched her party dress.

Even though my friends and family know Lily is not typical, I think it really came to light at her party. They seen a one year old who is closer to a 4 month old developmentally.She did not participate when I put her hands in her smash cake or opening her presents. I have to admit this was a bitter sweet day for me. It makes me sad that Lily didn't particapate in smashing her cake, to me its a 1 yr olds writ of passage. I almost felt silly even trying the smash cake because I knew the outcome while some of our guest did not. But I figured why not she only turns one once and I dont want any regrets. 

 Looking around the room of people watching my one year old was interesting. Everybody had a different expression on their face. Some were ready for her to dig into that cake and make a mess and others had a look of why are you even bothering to do this. I was somewhere in between. I knew she wasn't going to dig into the cake, but I hope that she might have some sort of reaction. 

Lily has made some developments that  I am very proud of. Her muscle tone has gone down dramatically.She use to be so tense that her legs were literally stuck together and crossed, called scissor legs. She now has great range of motion, even with an abnormal hip. She can roll over from her belly to her back and she was been working hard learning to roll from her back to her belly. She can sit supported for a few mintues as well. I know this doesn't sound like much for a one year old but in the world of Lissencephaly, it's huge.    

I got some typical questions I hate answering especially when it comes from people who should know the answer already. No, Lily isn't going to be eating by mouth, EVER.  Yes, she use to have pleasure feeds where she would eat about 10 mL's of baby food. This is not even a half of an oz, so no it's not enough food to sustain life, again pleasure feeds. This has dropped off dramatically in the last few months. We aren't sure why. It could be because she lost her newborn reflex to suck. After this goes away eating is a learned development. I do try daily and she has speech therapy bi-weekly, but it has come to the point where she doesn't want to swallow and feeding becomes more dangerous then it is worth. 

In this first year of Lily's life, we have been to more doctors offices then I would care to visit in a life time. I have educated myself with more medical terminology then most medical students and have become a part time Physical therapist, occupational therapist, speech pathologist and Early interventionist. I have learned how t'o insert NG tubes, take care of peg and mic-key button tubes, operate a feeding pump, apnea monitor, suction machine and bipap machine.I have also educated nurses on feeding pumps, farrel valve bags, and ALOT of terminology. I learned alot about people and how judgemental and cruel they can be without even noticing they are like that. I learned to except the "R" for what it is. (retard for those of you wondering). I learned it is just part of people's vocabulary and most times they don't mean it to be hurtful. I think its just one of those words you learn as a kid that sticks with you and isn't meant to hurt or make fun of people with developmental disabilities. I think it's just something you can't understand unless you live it. This year  has been a test, a test of strength , of will, and personal growth. I have learned to be realistic and accepting of all things good or bad. All in all, Lilyana has made me a better person. SO even though this year has been hard, we have been lucky. Lily only got sick once. The only hospital stays were for feeding tube placements and an EEG. 

I would like to say thank you to everyone who came to Lily's party. To me it wasn't a "party" but a gathering to celebrate Lily's LIFE. 

Anger got the best of me

I'm not the crying type, don't get me wrong I am human and a chick but I just don't cry easily or for any stupid reason, especially in front of others. I feel crying is a sign of self pity. Well tonight I had my party.
I dread phone calls from her doctors for fear  of more bad news. It's very rare to hear good news these days and after awhile its just too much to keep in. Well this evening was one of those nights with the dreaded call. My baby girl has central sleep Apnea. This means that her brain doesn't always remember to send signals to the muscles that make you breathe. She has Apnea episodes that last for 10 seconds or more. Her pulmonologist also told me she needs to see an ENT - ears nose & throat doctor. They have to check to see if the anatomy in her airway is normal.
I'm sitting here with lily, during her second sleep study of the week. She is covered in wires and her tiny face is hidden behind a huge Bipap mask. I started off really sad, had my pity party but now I'm angry. I'm angry for so many reasons. I'm angry my daughter has been given the life she lives. She really doesn't have a life. She sleeps most of the day, she can't swallow, she doesn't breathe correctly, she isn't mobile at all, she doesn't babble, she doesn't even smile. She will  be one years old in a few weeks and she doesn't even function at a 3 month olds level. My daughter relies on machines and tubes to live. She has 4 different types of therapy a week and this isn't even getting down to all her medical problems. How can this be ok. This goes way my selfish needs for a typical child if that's what everyone reading this is starting to think. I'm angry that horrible people are given healthy children when they don't deserve to have any at all.  I'm angry because  my daughter doesn't deserve this life of pain.
Anger is a feeling I have a hard time shaking. I'm a huge grudge holder. I get angry easily, I always have but now its different. I get angry with people who complain about there kids. I hate the " my kids are a pain in the ass" " my kids have horrible mouths and talk back"  and my all time fave " your lucky Lily sleeps so much". First off be thankful your kids can talk and walk, even if they have fresh mouths, maybe you should have raised them differently from the beginning when you thought the curse words and smart mouth was "cute". And how is Lily spending more time sleeping then awake lucky.... I guess people are really that selfish that they think the less interaction with your child, the better. I would do anything to have actual play time with Lily, where she interacts with me on her own. I would do anything to hear her laugh, see her smile, or call me mommy. 

It is what it is..

I find this pic amusing because her skin tone matches mine so
well but she looked like this due to her having jaundice!

Once we found out all about Lily, I have to admit I didn't want to tell people. I didn't want to here the what's wrong with her, what happened, did you do something you shouldn't have, why does she have that monitor, is that a feeding tube. These are all valid questions any curious person would ask. But they were still too overwhelming for me to process, let alone explain to others. I dreaded getting all these questions, I literally wanted to die. 




I went through a phase while Lilyana was in the NICU, where I literally spent all my at home time Googling everything I could have done to cause this. I use to think was this my fault, what the hell did I do. I knew I didn't DO anything but, I held this guilt. Once you hear that dreaded question "are you sure you didn't do anything" it started to get to me,  a lot. The doctors told me it wasn't anything I did but, they even tested her for a few viruses that could have caused it. Even though I was never sick during my pregnancy, they wanted to check.


Now a days I don't care about the questions. I would rather people ask questions then stare. Either ask a damn question or keep walking. The problem with questions these days is people want a full report. I don't always have the time to explain every little detail. Someone once told me I should make cards with her disorder and explain what it is and how it affects Lily. When I first heard this, I was like OMG I am not doing that LOL. I just didn't get the reasoning behind it. Now I COMPLETELY do! Thanks GWEN! 

Lily in her tumble forms chair,. she is holding her rattle
big stuff !!

I have to say my little girl touches peoples lives in a way not many can. Sometimes I feel like people are just drawn to her. I had a lady ask me about Lily the other day. She said do you mind if I ask, is that a feeding tube. I told her yes and she asked me what happened that she needed this. I just told her  a little about Lily without going into to much detail that she can't swallow thin liquids properly, that it ends up in her lungs and this can cause pneumonia. She went on to tell me a story about a little boy she knew that had to have a tube after heart surgery. I feel people think that they have to share something to relate to me for some reason. She didn't leave it alone at that. I swear she wanted to ask a million questions but was a afraid. So after a few more minutes she proceeded to ask what other things would be affected. I told her only time will tell but it could be anything from developmental delays to never being able to walk, talk, etc. I answered all her questions and didn't feel sad once. I'm not sure why but I didn't. She on the other hand shed a few tears. She told me that my story touched her heart. I will admit I kinda got uncomfortable at this point. Not sure why, maybe because she was showing the emotions I should be. But I literally didn't have those sad feelings at all. 


I think at this point in our lives, I have excepted everything. It is what it is. There is nothing that can be done to change it so the only thing left to do is except it and move on. Don't get me wrong I have my days. My angry days, my sad days, and my happy days. I have days where I am angry Lily can't do things other babies her age and younger are doing. It's definitely hard to see other peoples babies babbling, smiling, reaching for toys, sitting up and the big sigh, walking. I am so happy for others and so sad for Lilyana and myself. I know it's selfish. I feel like I have been robbed of the child I thought I would have, the amusement and laughter a growing baby would bring. Then I look at my precious baby, who is now close to 11 months old, and smile. 

My sweet girl on her first trip to the pool !

Lilyana with her cousin Caden

NICU Life

The NICU can be a depressing place to spend a lot of time in. I can't even tell you how many babies were in there. The NICU is broke down into clusters. If I'm remembering right there was 12 clusters. Each cluster held between 6-10 babies. At any given time each cluster was full.

Lilyana started in cluster 2. I believe there were 5 other babies in there with her. With the amount of time I spend in there, it's hard to not notice what others are going through. It's also hard not to compare your situation to others. There was a little boy there for maybe 3 days, before he went home. I'm not sure why he was there or how long but I remembering getting really depressed watching him get his car seat test. This meant he was going home. Don't get me wrong, I was happy that he was healthy and for his parents to take there baby home, but it's also hard to watch a baby leave and know yours has to stay. We watched this happen to every baby that Lily shared this cluster with. Some babies were there before her and others came after her and left shortly there after. I started to feel like she was never going to leave and it got depressing.

Her first few days, I was still in the hospital, which made life easy because I could go visit and stay as long as I wanted everyday. It was great in the middle of the night as well, I could just walk down the hall and visit. Once I got discharged things changed. I wasn't suppose to drive for 2 weeks. Bryan was home for the first week which was great.

When we went to visit for the first time since I was discharged, things started to get real. Her first Neonatalogist was great. I really liked her. She was honest without being brutal. She had mentioned that she wanted to order an MRI of Lily's head because her forehead was sloped. She didn't want to worry us to much, especially since Lily was our first. She told us that She wanted to make sure nothing else was going on considering the shape of her head. She decided to throw in that it could just be the way she was. Like I mentioned before in an earlier post, I already knew something was wrong but those few words gave Bryan so much hope. Lily just had this look to her that wasn't right. She looked like an under developed baby that was born way earlier then 35 weeks gestation.

The next few days were the same. We would get up every morning and go visit with her all day. She was still being fed by NG tube at this point. She was still on the IV and all her monitors as well. We would sit in fear while holding her. This was especially hard for me, considering she stopped breathing the first time I held her. We would stare at her monitor screen to make sure she was breathing. I don't even think I moved an inch while holding her in fear of hurting this tiny person. Within a few days she started photo therapy for her jaundice. She had severe jaundice and stayed under those lights for I believe 2 weeks. It felt like an eternity considering she stayed under those lights 23 hours a day. So we got to hold her for a total of an hour a day. We would just sit next to her incubator and touch her and stare at her. It wasn't enough though.

That following Thursday, which happened to be Thanksgiving, was not such a great day. If you have read my first post you know what happens here and I'm not going to go into detail, as it is too hard to write again. Lily had a new doctor at this point. Every week they were switched out. I didn't like this doctor at all. She was cold. She just told use Lilyana had Lissencephaly and here's a piece of paper with some info, like we knew what the hell she was talking about. This is when things became more real with her apnea, swallowing issues and such. She started on caffeine for her apnea the next week. It made her agitated big time. She was a different baby, and not in a good way. She had a hard time sleeping as well. Her apnea episodes didn't go away completely but they happened less often. She started oral feeds this week as well. It wasn't every feed, but one every 12 hours or so for the first few days. She had bradycardia's every time. Nobody could figure out why. Maybe she was just tired or wasn't getting the coordination to suck swallow breath down. I know all you other SN Mommas who's kids have swallowing issues know what I'm talking about. They brought in a speech therapist to evaluate her while she fed. She tried different nipples and nothing seemed to help to much. She did start to do well with a slow flow nipple. She also had a blood transfusion due to severe anemia. They did hold out on this hoping she would get better without it but after long it happened. Seeing that she was so tiny, it wasn't really that much blood but it was still scary. She handled it well. She is a strong little girl.

After about 2 weeks she was transferred to another cluster. This cluster was for babies doing really well, were stable and getting ready to go home very soon. This was an exciting thing!  She still had her NG tube for about 2 days while in this cluster. She was getting more feeds orally and was handling them pretty well. She only had a Brady once a feed and it was never to serious. She loved to pull out that NG tube and once she did in this cluster they left it out seeing that she wasn't using it at all. This gave us so much hope. Don't get me wrong we knew she was going home soon and were terrified of the fact of feeding her at home with nobody around god forbid she stopped breathing! But all the same exciting. We got to bring her car seat in for her car seat test. This involves the baby sitting in the car seat for an hour with no breathing issues or anything else. While I was there it was feeding time. So I did the routine. Took her temperature, changed her diaper, then feed. Well we didn't make it to the feeding part because while I was changing her diaper, Bryan mentioned her belly looking huge and bloated. We mentioned it to the nurse and she agreed. Next thing I know she is having an X ray done on her belly and learning her belly was full of air.

At this point, Lily was getting breast milk and formula every other feed because of weight gain issues. She wasn't gaining enough on breast milk alone. They even tried "fortifying" it with something like cereal. She was taken off her feeds for I can't remember how long, I think it was till the next morning. She was moved to cluster 1. We were back to not going home anytime soon. They hooked her up to some kind of machine were her stomach could empty out. This was put down her throat. I didn't handle this well and one of the nurses noticed and asked to me to step away. I looked at her like she was crazy and stayed right by my baby.  She was given an IV.  I have to mentioned I loved her nurse at this point. She got Lily's IV in with the first try. Lily is a HARD stick and every nurse had issues. We had to leave shortly after this because the NICU was closing for shift change. The drive home was horrible. I didn't know what was going on with my baby. I called numerous times that night just to keep checking on her status. She was doing OK, just extremely hungry which made for a cranky girl. She started her feeds back up in the am but wasn't given breast milk just to see what would happen. She did well and was putting on weight, but she was no longer tolerating oral feeds well at all. She was getting about have her feds orally and the other half by NG tube. A few days later she had a swallow study done. This was to she what was going on by X ray while she was being feed. They took her right before the NICU opened so I didn't get to go. While she was away I was trained on how to use her apnea monitor that she would go home with. This was exciting in a way because I knew we were on the path to going home.

When I was done with this, Lily was back in her crib but then came the sad news. She was aspirating her feeds. This means that she was having a hard time coordinating breathing and swallowing. Her milk was going into her lungs. It wasn't a huge amount but enough to make it dangerous. Dangerous being it could lead to aspiration pneumonia. This word is not a nice word in the Liss world. Pneumonia can kill her quickly. This is what takes most Liss babies other then seizures. I was told that she could learn to swallow and maybe be able to feed orally in the next few months since they were sure if it was the Lissencephaly or the prematurity causing her swallowing issue. The doctor gave me the choice A) I learn how to insert the NG tube into Lily's nose, or B) she could have a G-tube placed into her belly. Looking back I should have went with the G-tube, but I didn't. I held out hope that she would swallow and didn't want to put her through surgery. So that afternoon my fave nurse showed me how to insert the tube. I thought getting a c-section was scary well this took the cake big time. I was so nervous I wouldn't do it correctly. I managed to get it in on the first try with no issues. The nurse praised me and said I was a natural. I don't believe I'm a natural but I was a mother who had to suck it up and do what I had to do. She started back on NG tube feeds with nothing by mouth at all.

The next few days went well considering everything else.We were even told we could set up a room-in. This is were the parents get to stay over night in a room with the baby so you can get use to using her feeding pump and apnea monitor on our own but have the nurses right down the hall if anything were to come up. I didn't sleep a wink that night. I was terrified. Lily was feed every 3 hours and I was pumping every three hours. So I would set up her pump wake up Bryan and head back to the NICU to pump. This was a long night. I was terrified I was doing everything wrong and turns out we were using her pump wrong. The guy that "trained" us on how to use it didn't explain everything. It took 5 nurses to figure it out. We even called the company and they were no help because they didn't understand what any of us were telling them the problem was. The problem was he showed us how to set up the dose she was to get but not the rate it was to be given at. At about 5:45 am the nurse came to Bring Lily back to the NICU for all her morning meds and things that needed to be done and we headed home because they were closing. We weren't really sure if she was going to be able to come home that Saturday morning or on Sunday. When we got home I went to bed. I crashed hard but not for long by the time 10 am rolled around they were calling saying she was being discharged. We were so excited and scare at the same time.I was so ready, I forgot her outfit I wanted her to wear. When we got there the nurses loaded us up with supplies formula, bottles ,NG tubes, even a stethoscope. Not the cheap plastic one, but a real one.

The ride home was scary. I always said I'm not gonna be the mom to sit in the back with my baby on the way home but I did. I was afraid she would stop breathing. She did great on the ride home, I think I was the one that didn't breath. I was glad to be home with my baby girl. But now the fun really began!

Avery becomes Lilyana

I decided tonight it was time to write about my pregnancy and arrival of Lilyana, since it is becoming aware to me that only my husband, and a few others know what happened on Lily's birthday and events leading up to it. I'm not exactly sure if this is due to my lack of communication or others lack of listening and caring abilities. 


Bryan woke up one Saturday morning, to me staring at him. As soon as he focused in a bit I blatantly stated "I'm pretty sure I'm pregnant." He replied          "Whatever Krista, go back to sleep." So I did and let it go, for the time being. Later that day, I just couldn't stop thinking about it. I knew I was pregnant. I can't explain it, but I knew. While at the store I picked up a box of pregnancy tests. My plan was to wait til the morning to pee on this little stick. Well that lasted a whole hour before I couldn't take it anymore.  Before I could blink, 2 faint pink lines popped up. My mind was racing! All I could think was OMG OMG I'm pregnant. I cannot be pregnant. Am I ready to bring a person into this world? Are any of us REALLY ready? Doubt it. All I said to Bryan was, I told you so. Well those two pink lines were not good enough for him. A few hours later I used the second test and the same thing, a positive resolute. All Bryan could say was I need to see it in writing. Um, in writing? What the hell are you talking about. He wanted to me to go buy those test that actually say pregnant or not pregnant, because he didn't trust the Little pink lines or my intuition at this point! Well I went to wally world and purchased the pregnancy test just to appease him. Later on that day, I used this test. A little watch flashes as you wait. I think it was the longest 2 minutes of Bryan's life.After it stopped flashing the word pregnant popped up. Afraid the shock wore off, Bryan was ready to tell everybody ! I on the other hand was not. I really wanted to wait, let it soak in. But the next morning, bright and early, Bryan decided we needed to go tell our parents.


A few weeks prior to us finding out I was pregnant, I had started working at a salon. I started as an "assistant" and you work your way up to having your own chair in about 6 - 9 months. I was so excited about this job. I had FINALLY finished cosmetology school, gotten my licence and got a job ! Once they found out I was pregnant they pretty much told me I was useless. Defeated again. The manager told me I could work at the desk. She gave me a bunch of bullshit reasons of why I would no longer be affective and be able to learn the things I needed to learn about working in a salon. I did not want to work at the desk. I felt this was thrown at me because I could have sued there asses for firing me for getting pregnant. They won anyways and I walked away from the position. It was only a few hours a week and their attitudes towards me sucked.

I had my first doctors appointment when I was 8 weeks along. I had an ultrasound done and my doctor told me I was having a boy. Many doctors tell you at very different stages of pregnancy but I had more then a few very negative people who told me my doctor didn't know what he was talking about. Who wants to her that about your doctor, your OB/GYN, especially during your first pregnancy. I did my research and they can tell earlier then 20 weeks what the sex is. Now we didn't run out and buy boy stuff, I'm not that crazy, especially with everybody in my ear about you shouldn't buy ANYTHING until you know or have your baby shower after the baby is born. Are you kidding me. Who has a baby shower after the fact? I needed to be prepared before hand. That is just the type of person I am. I was told my due date was December 19, 2010. They gave me a prescription for prenatal vitamins and set up my next appointment. 


I started having morning sickness pretty bad. Even brushing my teeth made me gag. I actually lost a few pounds from not eating well from feeling so horrible. All I wanted for breakfast was watermelon, eggs, toast and chocolate milk. My morning sickness didn't last to long, just until my second trimester or so. I had more food diversions then cravings. I wanted taco bell and chocolate milk. I started to hate chicken, BBQ sauce, and eggs. 

I really though it was a boy. I had dreams about it and I dunno I just had this feeling but I still knew not to get my hopes up. Since I like to be so prepared I started looking for names a few months in. Not just for a boy name but for a girl too. I came across the name Avery. I loved this name, and if it was a boy, that would have been his name. Since I was feeling as if it was a boy we pretty much called the baby Avery. I hadn't pick out a girl's name yet because I was set on Lily. I had wanted that name since before I got pregnant. Every doctors appointment was routine. Pee, weight, blood pressure, blood draws, and babies heart beat. I had been tested for cystic fibrosis early on and found out I was a carrier but my husband was not so we didn't worry about it. Routine blood tests were done to look for downs syndrome, which looking back I think we got a yea yea its fine and that was it. At my 20 week appointment we had the ultrasound done to determine sex. That night I had a dream it was a girl and so I already knew what they were gonna tell me. The look on my husbands face when she said it was a girl was priceless. He was terrified. So Avery became Lily. I wasn't sure if I wanted just Lily or some variation. I still looked at plenty of names just to make sure but it always came back to Lily. Everybody must have hated her name because I got everybody and there mothers two cents. I have to say I didn't even consider anybodies suggestions because they were just the worse names I had EVER heard. My husband completely agreed and loved Lily as much as I did. But again, I didn't want just Lily so I came up with Lilyana. Her middle name was done from the get as well. My husbands middle name is Bryan and mine is Leigh. So I came up with Bryleigh. A little bit of both of us. 


I started working at CVS a few months back. It was the most stressful job I have ever had. I worked in the pharmacy. This CVS was in the middle of Sun City, which is old people central. It was constantly busy and never a dull moment. I had been called every name in the book. Some old man even called me and ignorant knocked up whore because I wouldn't let him pay for his Rx  at the front counter, out of the pharmacy. I worked the crappiest hours as well. I worked a full 40 hour week. I was exhausted. Some nights it was pretty much implied that I needed to stay way past my shift. Sometimes I didn't leave until 1 a.m. I hated this job. People were mean, other employees were mean and I was lucky to catch a fifteen minute break. I was starting to hate the world. 


I had my monthly doctors appointments which were always fine. I was gaining weight like I was suppose to, my blood pressure was always good. I went to a practice full of way to many doctors. I think it was seven or so. Every appointment I saw a different doctor or the nurse practitioner. At about 30 weeks, one of the doctors measured my belly for the first time. This didn't happen again until my 34 week appointment and I just so happened to get the same doctor. She said that I was measuring to small and I needed to come back next week for a growth ultrasound. I was extremely taken back. Now I have to worry for a full week that my baby isn't growing at the rate she should  and why. This was the longest week of my pregnancy. Between this and work, I was exhausted physically and mentally. I didn't know how much more I could take before I broke.


 Finally Wednesday rolled around and it was time for my appointment. While waiting to go back to the ultrasound room, a woman came out and sat fairly close to me looking at ultrasound pics of her baby. She got on the phone to tell her family that she was having a boy. I wasn't intentionally eves dropping but I heard her say "We are having a boy which came to our surprise since the doctor  told me I was having a girl! Wow, so either this doctor just likes to mess with peoples heads or hes a quack. So now I'm really starting to get nervous. 

A few weeks before the princess was born.

My husband and my mom came with me to this visit. Either way it was an ultrasound and we got to "see" Lilyana. The ultrasound tech starts taking her measurements and things of the baby. I tried to enjoy seeing her move around in there, but with how long it to for her to get the info she needed, I got more nervous. When she was done, she brought use to another room and had us wait for the results from the doctor. Now it became the guessing game. Which doctor will it be today. After about what seemed like forever, he walked in and tells me I need to be admitted to the hospital to have more tests and monitoring done and that I needed to go right away. He also told me that she was very small they were guesstimating around 4.5-5 lbs.This is way to small for a baby to be 35 weeks gestation. He said that it could possibly be the placenta, that it could have starting "dieing out" or the cord might not be functioning correctly and not giving the baby enough of what she needed to grow. 


I don't think any of us knew what to think on our drive to the hospital. Is it no big deal, maybe they would put me on bed rest and change my diet. I went through it all. When we got there I was admitted to the high risk floor and put on fetal monitors and received an IV right away. I was also put on strict bed rest. I was only allowed to get up to use the restroom. I had started having some pretty intense braxton hicks contractions. So I had to drink tons of water and keep moving my position so they would go away. Well they really didn't and the nurses were starting to think I might be going into labor. I was brought down to labor and delivery to be monitored more closely just in case it did turn out to be the real deal. After about an hour or so there, I was brought to another area to have an extensive ultrasound done. The first tech was having issues measuring the baby's head correctly so they sent in a second and apparently she couldn't get a clear shot either. I laid in funky positions, was made very uncomfortable and still nothing. An hour and two techs later, I was sent back up to labor and delivery. The hospital's specialist came in to speak with me before my doctor did. Not sure why they didn't come in together but whatever. I was told my placenta looked OK, but something was definitely wrong. He told me that she could have physical deformities to mental delays. He literally went from A-Z on what could be wrong and then states there is a chance that she could be perfectly fine. He suggested that I go home, stay on bed rest and come back weekly for monitoring and ultrasounds until I got to about 37 weeks when I would then be induced. He left and my doctor came in. This happened to be a doctor I had met once before, at the beginning of my pregnancy. She told me that my placenta was not working correctly and that my baby was very small. I was told that she probably would not handle a vaginal delivery so I would most likely be having a c-section. She also wanted to do it right then and there! I think because of difference of opinions I was sent back up to my room on the high risk floor for the night and I would have further monitoring started in the am. By this point I was drained. My day started at 8 am and it was now going on 9 p.m.I didn't sleep much that night not knowing what our fate was the next day. 


In the morning my nurse came in and hooked me back up to the fetal monitors again. Now the contractions were starting to feel real. Not sure if it was in my head or the stress was bringing on labor. So again, I had to drink buckets of water and keep moving my position. This wasn't really working. After a few more hours of this, a few nurses came in and told me to get my things together that I was going back down to labor and delivery. When we got there I was hooked back up to the IV and fetal monitor. Since I had already been pounding the water and was being pumped full of fluids, I had to pee every 10-15 minutes. My nurse wasn't exactly pleased with this seeing she had to unhook and hook me to the monitors. My husband decided he needed to call my mom and give her an update and let her know we were in labor and delivery again. The nurse over heard him tell her I'm not sure what's going on and she said "we are prepping you for an emergency c-section." WHAT ! OMG I think I about got sick. Everything was becoming even more real. The big argument with taking lily then or leaving her a few more weeks came down to lung development. Her heart rate was up and down and the doctors thought I could lose her if we waited to deliver. It was so nice of them to tell me this before we headed down to labor and delivery.


When the time actually came to head to the OR I couldn't stop shaking. I was so nervous. I shook so hard you could physical see it and I couldn't control it. I had never even been to the hospital for myself before this, so the idea of having my stomach cut open was pretty intense. I really didn't want to be alone but as a lot of you that have had c-sections know, your pretty much alone until seconds before they start. I was given a spinal which was terrifying. The nurse had to help keep me still because of my shaking. About 15 seconds after the spinal I started feeling its affects. I tried to move my legs just to see, nothing happened and that's pretty scary all on its own. I kept asking where is my husband I need my husband please don't start without him. I drove them crazy but I didn't care. I did not want to be alone. I was so scared I can't even describe the fear. Finally he walked in the door covered from head to toe in these light yellow scrubs. Neither of us could even speak to one another. We just looked each other in the eyes and that was enough. We both were terrified and we knew it. Then they started and I told the nurse attending to me I felt like i was gonna puke. She pumped me with something for nausea and it really worked but then I felt like there was a huge weigh on my chest and it scared me. So I was pumped with morphine, I believe. It helped and I don't really remember much after this. I was pretty drugged and in la la land. There were so many people in the delivery room. Most were from the NICU and ready for whatever Lily might need. She did breathe on her own for a little bit and I was able to see her long enough to kiss her and take a picture. Then they took her away and sent my husband away as well. So here I am, again in the delivery room, all alone and scared that I'm going to lose my baby. But now it was different. All the doctors and nurses were gone expect about 2 or 3 while I was being closed up. I was brought to recover were I kept feeling like I was going to pass out . The nurse there told me to relax and go to sleep. I wouldn't let myself, I couldn't let myself. Not knowing what was going on with my baby. Also I was afraid I was going to stop breathing ! I asked for my husband and this rude nurse told me he probably wouldn't be aloud back there since this was a women's hospital and all. She tells me this as I'm looking at a man across the way with another women recovering. I was there for about an hour when here he came rushing down the hall to be with me. Finally I wasn't alone. I had somebody to stand next to me and hold my hand. He was with me for maybe 5 minutes when it was time to go to my room. On our way, they brought me to the nicu to see my baby girl. I was not allowed to hold her or anything but I could get a look. I could barely see her in her clear box, with more wires and tubes hooked to her then I had ever seen in my life. She was on oxygen, but not intubated thank goodness.


I was wheeled back to my room after about 5 minutes or so. After we had got settled, I had some visitors and within an hour or 2 people were leaving and I was left to relax. At around 10:30 p.m., my nurse came to get me up outta bed and down to the nicu to see my daughter. This was a mess. I puked as soon as I stood up. I was determined to go see my daughter so I sucked it up and headed down. I was there long enough to wash my hands and take a peek at her before I vomited again and was asked to go back to my room. I was a mess it had been hours since I had her and I still hadn't even gotten a good look at her or even touch her. 


It was a long night. I was scared to sleep every time I started dosing off I felt like I was gonna stop breathing. I fought sleep most of the night. I listened to the baby in the next room cry and it broke my heart. I didn't get to have my baby with me. It wasn't fair! Why is this happening to me, to us and our family.


 I guess I finally dosed off about 4 or 5 and when I woke up next the sun was coming up. At this point the nicu was closing and I had to wait until around 11:30 a.m. for it to re-open. It was a long few hours waiting but finally the time came. I was wheeled down to the nicu to visit with my baby. When we got there, we got the NICU spiel. They told us about the hours, how things work and so on. But there she was, my tiny 3 lb 9 oz 16 1/2 in long baby girl. I was pretty afraid of what was wrong with her because her head was shaped pretty funny, her forehead was small and narrow compared to the rest of her face. She also had a hump on the back of her head. Nobody really talked about it or brought it up. I was told she came off oxygen around 2 a.m. and had done great on her own since. The nurse asked me if I wanted to take her temp and change her diaper. Of course I wanted to, but I have to admit I was terrified to hurt this tiny baby. She just seemed so fragile. I got through the diaper change with some pretty shaky hands. Then she asked if I wanted to feed her. Hell yea, hand her over. Well this little girl decided to scare the crap outta every body. She turned blue while I was feeding her and one of the nurses noticed it before  anybody and pretty much snatched her from me so he could figure things out and give her some oxygen. She only ate orally maybe a few more times before she had her NG tube inserted into her nose.This is when I really knew things were not good. They kept telling me preemies sometimes have trouble eating orally at first.I knew it was more then that, but I let it go for the time being and tried to stay positive. She started having apnea episodes during the second night. Thank goodness for monitors. The next few days were the same. Nothing to different happened except she started photo therapy for her jaundice.  This pretty much sucked because she had to be under the lights 23 hours a day.  We got to hold her for an hour a day. That's it. Sometimes the nurses would attend to other babies so we could have a few more minutes with her.

She turned blue right after this pic

 Sunday morning rolled around and another one of my doctors came in to discharge me. We waited until close to the time the nicu would be closing to leave. It was the hardest thing I ever had to do. I had to leave my baby behind. I kept it together until we got about 5 minutes away, then I lost it. It felt so wrong leaving her and I could not wait till the next morning to go see her.


To be continued....  

ultrasounds, X-rays, & urine cultures, Oh my!

Lilyana with her cousin Caden

Friday was a very long crappy day. Lilyana had to have a hip ultrasound, an X-ray to make sure her J-tube is still in place, and mommy got to collect her urine....


Unfortunately for me, the ultrasound techs at ST.Joseph's hospital are professional and wouldn't tell me anything so I have to wait to hear from the pediatrician. I don't think things have changed much from what the techs were discussing amongst them selves. For those that do not know, Lily had an ultrasound on her hip 6 months ago which revealed she has mild hip dysplasia. This pretty much means her hip isn't developing correctly. There are things that can be done to help, so I will just have to wait and see what the pediatrician thinks the next step should be.


From the ultrasound sound room we made our way down stairs to the X ray department, where we waited in a "dressing room" more like a small bathroom with 2 stalls with curtains and waited as patiently as I could for about 30 min before somebody came in and got us for her X ray. I have to mention X rays are pretty cool, You can see so much of whats going on in the body. I have never had more then dental X rays done so it's kinda new to me. She has had other X rays during a few swallow studies and such, which I might add is pretty cool to watch as well. Not that its cool that we even had to do this but you gotta make the best outta a bad situation. Any who back on track, this fortunately did not take long at all and we were on our way to the main hospitals radiology department to pick up a disk that has images of her most recent MRI. From there we made our way back upstairs to have a urine culture done on Lily. This was an ordeal from hell.


Lily's doctor wrote the orders for her to be cathed because it's quick and fairly easy to do. The nurse tells me "Oh no I can't cath her, I'm gonna give you a cup." Excuse me a cup? Sometimes my filter doesn't work to well and I blurted out what the hell am I suppose to do with a cup and a 9 month old? She said  I'm gonna give you a bag you place over her and then you pour it into the cup. Now I'm pissed. Why the hell did I bother to do this here at the HOSPITAL with fully capable nurses, when I could have went 10 minutes from my house to a lab where I would have been asked to do the same. But that is to be expected from a lab. I'm now thinking how am I going to be able to put this bag on correctly to get urine when I have watched nurse after nurse after nurse do this with no success. The nurses always manage to collect poop instead of pee. So instead of driving 45 min home and 45 min back to drop the urine off I decided to "bag" her in the car and drop off her MRI disk at the genetics office and hope she peed enough by then!  So now I'm in the hospital parking garage in the backseat of my car placing a bag over my daughters you know what. We made our way to another part of Tampa to drop off the disk. When I got back to the car I checked her to see how much she had peed by now, thank goodness I checked when I did b/c the bag was starting to leak. Thankfully she peed enough for me to get the bag off her and dump it in the cup. We make our way back to the hospital I drop it off and head home. Now it's the waiting game. I hate waiting for doctors to call, I'm not a very patience person so this tends to be torture to me.


This morning (Tuesday) I get a call from her doctors office about the urine, I have to say I panicked a little thinking she has a UTI. Well the nurse tells me I dropped her urine off without labeling it, therefore, it wasn't accepted and that I needed to go back and do it again. Are you kidding me! I have to do this again?! I dropped it off with all her paper work in the same bag the nurse gave me and she never once mentioned I needed to write her name on the cup. I guess I should have known this but, I didn't think about it. The nurse  looked at it when I handed it to her and she didn't say anything. Thanks a lot lady. So today I will be dragging Lily out in this horrible weather to do this all over again. Nothing can ever just be easy can it?


On a lighter note, Lilyana had physical therapy today. It went really well. Lilyana is starting to do way more then she could just a few months ago. She isn't doing anything on her own yet but, she is getting there and it's so exciting. Her therapist told me she is ready to start to work on more movement things, which in the Lissencephaly world is huge. Just imagine how excited you get when your typical baby starts to do something, the joy I feel when my atypical baby does stuff is overwhelming. She is working on rolling over and she tries so hard that she cries when she can't b/c she is so frustrated. Which really is a good thing because it's motivation. She can sit up for about a little over a min on her own or with very little support. While on her tummy, she started moving her legs under her belly which is where the crawl starts. To watch her do this and her therapist get extremely excited brought tears to my eyes this morning. It just goes to show her brain does function and she does have thoughts just not in typical way. Lilyana just functions in her own way.

Another day, Another Doctor

The last 24 hours have been pretty eventful. Lily's two top teeth are cutting through, which makes for a pretty cranky little girl. She also had some reflux issues last night. She vomited blood a few times. Needless to say, we didn't get to much sleep last night.

This morning she had physical therapy, followed by a G.I. appointment. Therapy went well, as usually. She has a great therapist. Today we worked on her upper body, neck, shoulders, etc. She tends to get extremely stiff and extends  her arms so much they turn in. This is not helping her accomplish some of her goals, i.e. reaching for toys, holding toys and such. We are currently working on getting her an occupational therapist to work on these things more. We also work with her on tummy time and sitting. Visits to the G.I. are always fun. We left with a referral for an x-ray of her belly to make sure her GJ-tube hasn't moved into her belly and for a urine culture. On a good note, she is gaining weigh pretty well. She is at 11 lbs 8 oz. She has gained about 2 lbs this last month.

Tiny Lily in the NICU 

This little person has had more X-rays, ultrasounds, urine cultures, hospital visits, doctor's visits, trips to the lab, and taken more meds in her 9 months 1 week of life then I have in 26 years. Who imagines this  life for there child ? I'm constantly reminded of where Lily should be developmental wise for her age. Some days it doesn't bother me, other days it's heartbreaking. I never imagined while I was pregnant that life would have taken us here.