Friday, July 1, 2011

It's been a long time coming....

I know, I know, I haven't been good about blogging, but as I'm sure you can understand, my life has been thrown upside down and spinning more than I EVER could have imagined after Aliyah's birth. Where do I start?
  Well, let's start at her birth (nightmare!!!) June 13th I went in for mt induction at noon, and around 5 that evening got my epideral. Well that was unsuccessful, the tech went in the wrong vertibrate and I ended up with a spinal, which meant I had to get the numbing meds administered every hr. Around 8 is when they broke my water and then came on the HEAVY contractions. The floor had an emergency C- section, and ALL of the docs, nurses, anystegiolgists (sure spelled wrong) where away to help the emergency case, and I was ALONE with my husband with NO pain medication, and felt EVERY contraction, and started pushing with only nurse practitioners in the room. They said "DON"T PUSH", but Aliyah said, "YEAH RIGHT", and right before she came out, in came the NICU team, and the doctor, but the doc made the mistake of coming to my bedside and I just remember grabbing her coat, and begging for meds. She had to ask me to let her go so she could deliver my baby, and moments later, my sunshine was born, weighing in at 6lbs, 9oz/19 in long.
  Away she went to the NICU, and we had 5 whole days of relaxation. Her stats were great, she looked healthy, I even got to hold her for a while : ).
  On the 5th day, I walked her down to the OR, kissed her goodbye, and prayed that I would see her again after her Norwood.  8 hours later, I get a call, and a nurse said, 'Mrs. Chambers, your baby's operation is over and she is doing fine" : D THANK YOU JESUS!!!!!!!!!!!!!
  Everyday since we have faithfully been in the hospital as she continues to recover, and it has been EXHAUSTING!!! Some days are better than others. The one constant and biggest challenge we face is her chest output.  On day 10 we discovered she has mosaic Turner Syndrome, which enlarged her lymph vessels. During her surgury a lymph vessel was severed, and that causes drainage. So before she can eat that drainage must stop, if not we are looking at another surgury to make it stop.
  There also have been little things here and there that have slowed down her recovery. It is at the point that I don't know how to feel on a daily basis, and our stress level is at an ultimate high.
  In the midst of all of this I have two other children to raise. Luckily Jasmine, my oldest, is 15 and can be at her dad's enjoing some of her summer.  My youngest, Kris, now 1 1/2, is with me and my husband, here aat UVA, getting pushed around in his stroller, trying to be good, but not wanting to all of the time, and we try our best to keep him occupied the best we can.  Soon my husband will have to go back to work, and I will have to make other arrangements for Kris, and it will hurt me more with him away while I must stay with my lil angel. 
  ALL of this is HARD!  EVERY last bit of it!!!!!!! I had NO idea, and anyone who thinks they are preparing themselves for something like this is just kidding themselves!!!!!!!
  Today I am just frustrated, tomarrow I could be estatic. Each sunrise brings on a new emotion and I can barely keep up. But I'm here, and I continue to thrive, just as my daughter does. WE WILL FIGHT this !!!!!!! With ALL of our might!!!!!!!! And God will be with us every step of the way!!!!!! Please continue to pray, pray with all of your <3 to make Aliyah's <3 whole. <3 <3 <3

Tuesday, May 24, 2011


  Every expecting mother at the end of her pregnacy, starts to get an axious feeling. I think it is natural, seeing that you have been pregnant for 8 months and pretty much over it.  But in my case anticipating the birth of Aliyah seems to be even more overwhelming because there are so many unknowns as to her health and no real way of knowing until after she's here.
  Yes, I know she has HLHS(Single right ventricle), but there also has been another concern weighing heavy on my mind.  At my last two ultrasound visits, my OB mentioned that her arm and leg measurements seem to be a little off.  A  little, meaning, 3 weeks. I asked what could this possilbly mean, and he said, best case senerio, she will be of short statue, worst case, a chromosome defieciency....WHAT???? After hearing the news, I was heartbroke all over again!  I had to go upstairs to my cardiologist for another appointment, and they could tell something was wrong. I told them the news, and they said "well let us have a look."  Their measurments were different, her arms were 2 weeks off, and her legs were about a week off, and they would consider that to be in the "normal" range. The cardiologists told me to take what my OB had said under advisement, but not to worry untill there is someting to worry about. IMPOSSIBLE!!!!  I don't know what to think, and until she gets here, I will have unanswered questions. I know no matter what, I will love her unconditionally!  It's just hard to not know what you are up against. I have a feeling that this is only the beginning of the guessing game, WOW it's enough to drive you crazy! I have a new respect for veteran heart moms! I'm still only a rookie to all of this and I question my strenghth on a daily basis. I pray, pray, pray and try to put it all in God's hands.
  One things for sure, my baby girl will be here soon! I have a feeling that seeing her face will put all of my worries to rest. I know that if she can do it, so can I, and I will be there, no matter what!<3

Monday, May 16, 2011

The ending & beginning

  Well I am now at 35 weeks and I have mixed emotions about my life right now.  I know soon that my little bundle of joy will be here finally. Pregnancy has been hard this time, with everything considered, not to mention my son is only a year and a half, so I feel like I have been pregnant FOREVER! It will be a relief to finally see her face, kiss her cheeks, and smell her new baby smell. But a part of me is sad that I will no longer be able to protect her. My heart will no longer beat for her, and she will start her fight for survival. Not only will a little girl soon enter this world, she will also be my heart warrior.  Although I am learning to put all of my faith and trust in God, the anticipation of what's to come is overbearing!
  I love to feel her move & kick, validating that she is doing well.  It was almost like she knew I wondered how she was and poked me to say" I'm ok mom". I have worried way too much about her, but never having a child with such a serious condition made me the most stressed I've ever felt. I have drove my husband absolutly crazy, but I love him even more for staying by my side!
  I had another UVA visit today, and I expected to get a date to be induced. Instead they told me that they would like Aliyah to go to about 39 weeks, I don't see this being possible since both my daughter and son came early and my water broke with both. I am an hour and  half away from UVA and I hope to not be on the interstate in labor!
  I am 1 cm dialated and 35 weeks, I will be going on weekly visits now, so things may change accordingly. I know that she will be here in 3-4 weeks.  Here it comes, the BIG day, Wow I can't believe it! Wish US LUCK!! : )

Saturday, April 9, 2011

Aliyah Rayne

  I know that EVERY mother tries to pick a name that usually means something to them, or has some sort of sentimental value. I selected my first born's name based on a name I imagined for her as a child.  I always knew I would be a mom, as a child I would daydream of what my future life as a mother would be like and JASMINE always stayed with me thru many times of playing house with my dolls.  Her middle name SKIE came to me when I was pregnant with her, and I tell her it means.."sky is the limit in what you can accomplish!"
  Now with my son, his father and I had many disagreements on what he should be named.  My husband would come up with the most obnoxiuos names that I would NEVER curse my son with! CEASAR? Really, what was he thinking?(your welcome son) Really the ONLY name we could agree on was KRISTOPHER, seeing that I wasn't fond of his first name VICTOR (sorry hun), but I honored him by giving Kris his middle name LEE : )
  Of corse I wanted to give my new little one a name with meaning, so I began my search online to find something appropriate. Really, all of the names with great meanings were very hard to pronounce, or they just weren't that appealing. I was starting to get discouraged. Then my mom had mentioned that my 16 yr old neice had been doing her own search and came up with RAIN- which means, "blessing from God", and it hit me like lightning.  I have often thought of rain as a bother, no one wants to deal with it but it's inevidable. And then I thought of my daughter's heart condition and how I so much don't want her to have to deal with any of what she will endure. I also realized that although a nuscience, rain is God's way of blessing the earth to keep everything growing, and just like the rain I consider my daughter to be God's blessing. ALIYAH is something that just came to me and put together with RAYNE, I now have my ALIYAH RAYNE : )
  Needless to say that I look at the rain now with a whole new outlook.  I will never complain about it ever again!  For what is sunshine without  RAYNE! ( MOMMY <3's U, baby girl!)

I dedicate this blog to my lil neice Briana Rodriguez, thank you for helping give your cousin such a beautiful name, <3 u, auntie Tonya!

Thursday, March 24, 2011

UVA visit : )

My husband and I had a bunch of appointments at UVA last week, 3 to be exact. First, I had to get an ultrasound to check Aaliyah's growth, and everything seemed to be good. She now weighs 1lb 14oz, almost 2 lbs, and all of her measurments are right on track! Then we had to see another cardiologist. He checked Aaliyah's heart and let us know that one of her atricles was a little on the small side and they would keep a close eye on it to make sure that it didn't close up, but also mentioned that if it was going to it probally would have by now. So that was good to hear : ). Finally, we had a visit to the NICU. this was the most challenging for us. More my husband than myself, because he hasn't allowed himself to look at graphic photos on HLHS, but I have taken it ALL in. I want to prepare myself as much as possible because I want to be as strong as I can be for our daughter when I have to. I must say that the set up was pretty confined, thus making it only possible for 2 visitors at a time when we will be allowed to visit out angel. They have a room especially for breastfeeding mothers , in which I plan to do, and a room for the actual feedings. Victor held up pretty good until I heard him ask, "May we see a baby that has our daughter's condition?", I couldn't believe he asked that, and I wasn't sure if we were allowed, but was surprized when we were answered back, "sure", and before I knew it we were being led to a little bed and I looked down and saw this amazing little fighter with all of these tubes and tape around his little precious face, and he was sleeping peacefully. I looked up at my husband and saw the stream of tears falling from his face, and I knew right then that he finally gets it! Men don't seem to bond while a child is in utero as much as women, in which I can fully understand why. They don't experience the feel of a kick or a flutter that somehow says, "Good morning, mom, what's for breakfast?" I consider this to be one of the greatest gifts. But then in that moment, my husband got to connect to something that was real to him and suddenly he has become so much more eager to learn about Aaliyah and her condition. If this is what happens when he sees someone else's precious child, I can't wait to see how he and our daughter will have their own special bond. One things for sure she will and has already changed our lives FOREVER!

Monday, February 21, 2011

A Sign

  That Sunday before my schedualed procedure, I felt lead to go to church.  It took some heavy conviencing, but I got my husband to go as well.  I went with intentions of asking God to be with me, and speak to my heart, to help guide me, and to reassure that we were doing the right thing.  The pastor started to speak on God having a plan for everyone, she went on to say that before we were born we had a purpose. That God had designed a plan for each and every one of us. That it was up to us to fulfill our purpose. And I then knew that my daughter had a better fate than the one we had planned for her. That she too has a purpose, and that it's my job to make sure she fulfills her purpose!
  One of the hardest things I've ever had to do was to explain to my husband that I had changed my mind. That I wanted my daughter to have a chance, no matter what, she deserved at least a chance.  He told me I was ripping his heart back open, and what he thought we had settled was back up for discussion. We argued and cried and I thought he would never change his mind. Then after becoming emotionally drained, and seperating myself from him, he came into the room, and said, "...I'm with you, let's give her a chance!" I couldn't have hugged him tighter! I instantly felt relieved! I realized the decision was never mine, it was always up to God.  I decieded that everything that happens from this day forth, I WILL leave up to God! I lay it at his feet, and I will accept it! I know now that this IS my path! I also know that he will be with every step of the way!
  I called UVA first thing monday morning, and was so happy to announce that we had changed our minds.  It was the most memorable VALENTINE"S DAY I know that I will cherish for the rest of my life!!  It's the day that God saved Aaliyah's heart, by speaking to mine!!
  I don't know what the future holds, I know we will go thru what we have to thru, but it's comforting to know that God will be there with us thru the whole journey. Keep us in your prayers!

A Decision To Be Made

  I called UVA and I was still very much upset!  A nurse got on the phone and then told me that they saw babies born there all the time with heart defects, that there were things that could be done, and for me to try to stay strong for my baby and come in to see what exactly we were up against. Some people have been blessed to speak and be calming, and I was thankful for this nurse.
  I had to wait 4 long days to go to UVA.  In that time I imagined so many random things. My mind would never stop thinking of the endless possibilites. I went online and everything I came upon went straight to these unfamiliar words...Hypoplastic Left Heart Syndrome.  I then became obsessed with looking at other people's stories, scared of what they revieled.  I then knew this was serious!
  The day finally came, we headed off to UVA. I met the cardiologist, the high risk gynocologist, and a number of nurses who seemed to be very eager to meet me. After getting another ultrasound, the doctors sat us down and confirmed that our daughter would be born with HLHS.  They then explained that we had a very hard decision to make.  It was in our hands whether or not we proceed with this pregnacy, or terminate.  We were asked to go home and give it some serious thought.
  We walked silent all the way to the parking garage, and then I couldn't take it anymore!  I asked my husband, "what do you think?", he then helped me in the car and started explaining his thoughts.  "I can't do it Tonya!", he said, and anger immediatly struck me. He went on to say he didn't want to see her suffer, we had to think of our other children, and the more he spoke the more he began to make sense. The drive home was long, and I couldn't get that song out of my head, "I hope you dance".  I had remembered hearing it watching a little girl's story on YOU TUBE, that had HLHS. It played over and over in my mind. I looked at my husband and agreed, "We can't do this", I said. The next day I called UVA and told them we had decieded to terminate.  They set me up an appointment for 3:00 Feb.14th. (valentine's day).  After considering my finacial situation, her condition, my other children, and my husband's feedback, I thought it was best.  We had to wait for the weekend to pass, and that Monday I would have to go thru this awful procedure. 
  Doctor's explained in order to terminate, they would have to stop my baby's heart with and injection thru my abdomen. I then would have to give birth to a lifeless child.  They even suggested that I see the baby after birth, for closure. I was terrified! I still wondered, "is this the right thing to do ?" " I don't want to play God, I don't want to have to make this decision!"  Something wasn't settled in my mind!  I needed answers, and the only on I could turn to was GOD!!!