"Never let your fears outweigh your hopes"....

Better said than done...It is 5:06a.m. I have been tossing and turning ALL night long, and finally decided to get up. My nerves are getting the best of me. I laid in bed having realizations, they always sound better in my head, but it is always hard to express it once I go to type it.

At the beginning of my blog I wrote a quote that I had seen at the Neurosurgeons office when I first found out about baby Angelina's condition. "Never let your fears outweigh your hopes" It has stayed with me through this whole journey but I don't always live by it. I have lived through fear this whole process. For example,my dear friends had a suprise baby shower for me. I cried like a baby when finding out that they had planed the baby shower in celebration of Baby Angelina, in one second seeing the ballons hanging from the chair "It's a Girl" was both a shock that they planned it for me and second, a shock that  soon this baby girl that I have been so scarred of will be here. I was scarred to celebrate her coming, maybe if I didn't celebrate, my heart wouldn't get attached. ( a huge character defect of mine,if I don't get close, I won't get hurt).

Like I said a minute ago I have lived in fear this whole process. I am scarred shitless. I can handle the pain of an epidural (never had one) I can handle the thought of being cut open, or even recovering from the c-section, but what scares me the most, is seeing baby Angelina, I am scarred of her. I sit here crying thinking of how scarred I am.I am frightened of seeing her back for the first time, of diagnosis the doctors will be telling me, I am scarred for her to go into surgery, will she be in pain? All the questions of the past seven months are piling up and all the fears of these questions I have had, are all soon going to be answered... or may or not be reality.

Living in fear is sometimes a good thing. But from this minute forward, all the prayers that I have said, all the fears that I have, I give them to god, I have asked god through this whole process to please take my fears, and today, I am putting aside my fears, and the little Angel that I fear so much will be surrounded by HOPE and LOVE that will move mountains. I am ready for any Journey that comes my way my faith will outweigh my fears, I am ready for Angelina's Journey to begin!!!

Ten more days!!!

SO, I went in yesterday for my final doctors appointment. Angelina looked so good. She is weighing in at 6pds 12ounces. She continues to not have fluid on her brain (hydrocephalus), and as far as her lesion, the doctors still don't see a cyst that you normally see on Spina Bifida baby's that have Mylomeningocele. SO, what does that all mean...it means that we have to "wait and see" until she is born.

Thursday the 29th I check in at 10:30 a.m. and they will do the c-section at 12:30, depending on how she is doing they will take her to surgery that evening or the next morning. I am sure I am repeating myself, but honestly it is nice to not have anything change the last few months, no bad news just good I am so grateful for that. I will make sure I update my blog with pictures and how she is doing.

Update

Today I had another doctor appointment. I am going twice a week now. Mondays I go for a NST test which is a Non-Stress Test, they hook me up to a machine and make sure baby's heart is beating well and she is having adequate movement, and she is not stressed. Thursdays I go for a NST test and a regular OB visit. 

SO, today 11/17/2011 I had a very eventful doctors appointment, I went in at 1p.m did my NST test, that took thirty minutes, then they had me do a Ultrasound for 45 minutes, they were concerned because she showed signs of early distress. They sent me to the Hospital for further testing. IT was actually the NST test again, but with a "better" machine. Baby was monitored for 30 minutes, then they did another ultrasound which is called a Bio-Physical, that tests to see if baby is "practice breathing", she is supposed to do it at least every 45 minutes. I thought that this was going to be a long 45 minutes, but she actually did her practice breathing ten minutes in to the US, the doctor was pleased and they let me go home. I have learned with this pregnancy that it is not going to be like a "normal" pregnancy by any means. I have to roll with the punches and just know it is going to be a roller coaster. 

11/21/11-
Had another doc appointment. This time it was a Bio-physical, NST and Growth rate ultrasound. SO, the doc said that she is weighing 3pds 12oz. This is an amazing part, she has NO fluid on her brain (hydrocephalus) no clubbing of her feet, and the doctor said that her lesion is flat, and appears to have "no skin breaks" so they are assuming her lesion is called a Meningocele.The doctor said that that is a good thing, guess it is better than the Mylomeningocele.  All very Greek to me, but I am going to do major research to get educated on what to expect. I am not getting excited as to her Meningocele diagnosis so I won't be surprised when she is born if it is worse than what docs say. (might sound pessimistic, but I would rather be expecting worst and get better, than expect the outcome the better and get later disappointed) call me crazy!! 
The date is still set for my c-section which is December 29th 2011 @ 12:30p so lots of prayers that date are in great need. Also, just found out that the Neurosurgeon that we picked for baby Angelina's surgery is on call those dates, thank god, because I really liked him and also got good feedback from people that have gone to him before. We did not set up the appointment for her closure surgery because the docs want to monitor her and make sure she is well enough to survive surgery. As it looks her prognosis has been very positive so her surgery should be that night or early the next morning.

Family

These Darn emotions...

SO, I thought I was doing well with my emotions lately. Until this morning, waking up in utter fear has been quite the normal for me, when I first found out about my little one. But this morning was different.I woke up this morning in fear, yep, fear. Nothing more nothing less. I am scared of having Angelina. I am fearful of her condition. As long as I am pregnant she is safe and although her condition is real it will not seem real until she is born. All of the unknowns become reality and all the "what if's" become truth. I have been feeling a little resentful lately also. There are women all around me having healthy babies, and mine I don't know, I don't know what to expect. I want to be happy about my pregnancy but it is hard. The word Spina Bifida is ALWAYS in the back of my mind, and not only is it fearful for me i already resent it.
I try living in the "Just for Today" but it is hard when all I really want to know is what Angelina's future has in store for her. What our family has in store. Ugh, all these "what if's" drive me nuts, AND so does these darn emotions!!

Another Doc Appointment

Went to the Doctor again yesterday. The ultrasound was very positive. So far, her ventricles are measuring the left larger than the right. They are both still in the "normal" range but still bigger than they are supposed to be. Her head is measuring two weeks behind, but it has consistently been that way since the beginning. Still cannot view the cerebellum but they are reassuring me it is there, this condition is called Arnold Chiari Malformation, and goes along with Spina Bifida. The spinal cord is pulling her cerebellum down due to the open lesion in her spine. From the research I have done, she will have very minimal side affects from this condition. The docs say when they do her closer surgery after time everything should go back to were it is supposed to, doesn't always happen, but we hope for the best.   I am now 30 weeks and cannot believe how close I am getting to her arrival. I am getting more and more uncomfortable. This being my fourth pregnancy and my body is done!! My emotions have been better lately as they seem to fluctuate with wether or not we get good news from the doctors. Since we have been getting good news lately or nothing changing my emotions have been stable.
On another note, I am a member of a website it is on the Baby Center website called Spina Bifida Kids. Each member is a parent of or going to be a parent of a child with Spina Bifida,  I am greatly humbled and feel like these women have been there for me since day one with a positive uplift with each posting I make about my worries, concerns or questions about Spina Bifida. My heart goes out to the women who are expecting and are told there baby has SB, like myself I was not given very good news and was led to belive my child would or could possible be a vegetable. Or be mentally retarded. I was given the option many times to terminate, I myself obviously did not but how many women out there are not informed and educated about SB and are led to belive they have to terminate. When inside a precious child is ok, mentally but yes will live with SB. SB is not a death sentence, it is more of a physical disability than mental. I don't have all the answers I still have a long road ahead of me as far as what to expect with our precious one. I have made this decision and what ever the outcome I will live with. But i made my decision based on facts, research , and then my heart. Some women are not given that option, and again my heart goes out to you....

Neonatologist

Today I had an appointment with another Specialist, a Neonatologist. It's funny because all of the specialists I have met with I have never had to say the words in my life, and now they have become a normal vocabulary for me. SO, the Neo is a pediatrician who is specially trained to care for newborns in the most complex situations. They care for preemies,and high risk newborns like my baby Angelina whom has SB. Once Angelina is born the Neonatologist and the Neuroserugeon will be caring for her, assessing her and seeing what her needs will be. Test after test to make sure all body parts are functioning the way they are supposed to and if not getting her the help she needs.

I found it to be a very helpful appointment, not one where I left crying, but rather felt informed. I did have a hard time hearing that when she is born neither me or George could hold her. The doctor said I can give her a kiss and then they wisk her away to NICU. I did almost start crying after hearing that aspect of the delivery process. I have had my other three ALL natural, so this is a sad, and scary thing for me, to not be able to bond with my little angel.

All of this process is a lot to take in sometimes. I get to a point when I feel I have come to terms with what to expect with my baby and the SB, but then other times I lay in bed and second guess everything my sweet girl will have to endure.I question my parenting on a daily basis wondering if I will be strong enough for her and the rest of my family members, will I be able to be strong even when it seems impossible.I wish I could think of Angelina and not the Spina Bifida, I already wish I could take away the pain she will have to endure.. I already wish I was the one going in to surgery for her. I pray that god will wrap his hands around her and I pray daily that she grows through love and grows strong.

New Beginnings

Lemon Sign Marker for Spina Bifida

Angelina is due January 5th 2012. I found out at my 18week Ultra Sound that we are going to have  another beautiful baby girl. Although, my son Alexander was not happy at all because he wanted another brother, we knew that she was going to be just as special as our other children. I waited in the room with my two youngest Alexander and Athena to hear from the doctor. The doctor came in and she looked at me and said " I wish I had good news for you", I wasn't really paying attention because Alexander and Athena were fighting over a baggie of cheerios. I looked at the doctor and asked her what was wrong, she looked at me and said " your baby's head is deformed and she has no cerebellum, we are wanting you to go to a specialist to get further Ultrasounds". I felt like a bomb dropped in the room, and my ears started ringing from the loud noise. All I heard was my kids fighting over the cheerios and the doctor looking at me, she was talking but till this day I have no idea what she said. I left the room with papers in my hand that the doctor gave me for the specialist. My kids followed behind me, I stood in the hallway and cried. I walked to my car and sat in the seat and cried some more. I called George and grasping through air told him exactly what the doctor said, well exactly what I had heard. George has always been my rock when he is strong I can be strong, when I see him melt, (which is very rare) I get anxious and melt myself. He came home hours later to console me. I got a call about an hour later from the referral nurse at my ob/gyn, who confirmed my appointment with the specialist. Our appointment was scheduled for that day, it was a Friday at 3p.m., come hell or high water we would be there!! Three came around and we found ourselves at the specialists office. Dr. Wolfson a older doctor came in the room and started doing the ultrasound. He said the deformity that my ob/gyn. was talking about was called the "lemon sign" its a marker for Spina Bifida. He also said that he could not see the cerebellum but assumed it was being pulled down from the tethering of the spinal cord because the baby had a open lesion in her back. The next thing he looked for was the lesion. After about thirty minutes, he found the opening at around S1-S2. Which means her sacrum. He explained that the lower the lesion level the better the outcome. Meaning hoping for less disabilities. We were at the doctor from 3pm until past closing with the doctor. I was so grateful to him that day. He was very compassionate, didn't scare us. He just gave us the facts and advised us not to go on the internet and Google. The next few weeks were a blur, I cried every day, I felt like I was mourning the loss of a loved one, I guess I was mourning the loss of a baby I thought I was having. I posted a paragraph out of my journal, details some of the thoughts I was having, we were also at a cross roads,

August 19, 2011-

I am in fear, I get consumed with fear. Were my whole body will shake and get butterflies. I am fearful of the spina bifida, and angry at the spina bifida. Not at the baby. Why can’t I make a decision and be ok with it? I had an appointment for termination yesterday and couldn’t do it. I felt angry and sad, and I was killing a baby because of her illness. I couldn’t live with myself. Yet, I sit here as I write this and am fearful an consumable fear that radiates my whole body and am scared of my decision of going through with pregnancy. I want this baby, I want her and love her. I don’t want the SB, I am scarred of her being deformed or having so many health problems. I am fearful of the worst. I have a hard time being ok with my decision, although it’s the right one. I can’t terminate this baby. What if she brings an amount of love, patience and strength to me that will change me forever? I am hoping this fear will go away. I am living in “what if” and fear and not faith and hope. God please consume me with hope and faith PLEASE.

I am now 28weeks pregnant and have come to peace with our decisions and cannot wait to meet our little girl. I still get scarred going to the doctors and hearing news about the baby. It is all a "wait and see" kind of process. The doctors won't know any "for Sure's" until the day we meet her and as she grows. We are a strong family, I am a strong person. I can cry, I can second guess, but I am a strong mother, Angelina is a fighter and that is what she will do, be strong like her family and we can all get through this together.
I am doing this blog so my family and friends can follow our journey. Thank You.