Harsh Reality

As I’m sure most of you have figured out, my long abscenses are the product of having both a two year old AND a newborn. I am ridiculously slammed , but i wouldn’t have it any other way.

I have also been somewhat avoiding typing this entry. I guess seeing it in black and white will just make it all too real.

Emily has been diagnosed with cerebral palsy. We heard those God awful words last month at her routine well check, and after a gut-wrenching trip to see a neurologist at Children’s Hospital in Dallas, our fears have been confirmed. After studying her the results of her MRI, she has been given a 20-30% chance of ever crawling. Even less of a chance of walking. Hearing that literally felt like someone had shot me in the chest.

A lot of people don’t understand what cerebral palsy means. There are many variables. For my daughter, it means that her torso and neck are very weak. This makes feedings very difficult. She often arches her neck and “fights” her bottle because she feels as though she has no control over the flow of milk. It also means that the muscles in her arms and legs are too tight. They are becoming more and more rigid as she gets older. When she extends those mucsles, she cries out in pain. We also found out that there is a chance that she could suffer from mental retardation as well.

I feel so selfish and horrible as I type this. Because none of this should matter to me, I LOVE my daughter! She is amazing… I’ve never seen a baby so happy. She smiles more than any child I’ve ever seen, even with tears in her eyes at times. She is so strong and vibrant, she is my everything.

BUT I AM DEVASTATED FOR HER…

I am scared of the pain that she will have to endure, both physically and emotionally. I am so scared that others will not love her the way I do. I am scared of the teasing, the lack of undertsanding that others will show. I am scared that she won’t go to prom, I am sickened by the fact that I may never help my little girl pick out her wedding dress. NOT because it has changed my view of how life would turn out, but because I wanted her to be happy. I wanted to give her the world, and I feel like somehow I took it away from her.

Everyone keeps saying it’s not my fault. I explained it to my husband this way… “If you had a car crash and the kids were hurt… Even if the wreck was not your fault… you would feel guilty.”

My body failed this baby. The drs seem to think that there was a blood clot in her cord, which in turn caused a stroke while she was in the womb. The same thing that killed all the others.

It makes me sick.

But I will not lose hope. My daughter is HERE. She did not die like her brothers and sisters before her. She is a miracle regardless of what any test or diagnosis may say otherwise. She may not be “up to par” with our world’s standards, but she is LOVED.

She will always be loved. I will do anything to help her. I will always fight to give her the best chance that she can have.

I WILL take my daughter dress shopping, I WILL do all of the things that mother’s and daughters are supposed to do together.

Because she is my little girl. The one I prayed for. The one I cried for. The one I would give my life for. And I thank God every day for her existance. I thank Him, because I did NOT have to bury this daughter.

The night that she was at her worst in the NICU, I promised God that if He could just GET HER HOME, I would handle the rest. I could handle anything, no matter how bad, I just wanted my baby to LIVE.

Now it’s my turn.

Emily’s Story

All of the precautions we had taken to keep Emily inside could not hold her in any longer. On April 30th, 2009, our precious daughter was born into this world. Her arrival was much too early… nine weeks early to be exact.

 

Her birth was one of the single most terrifying moments of our lives. It all happened so fast, almost too fast to even make it to the hospital. That was the longest car ride of my life. We arrived at the hospital at 11:56pm, and she was born at 12:05 am. I guess she just could not hold on any longer.

 

Emily's Birth

I knew by the look on my husband’s face that she wasn’t okay. After she came out, I was too scared to bend forward to look at her. I was scared as to what I might see. She was quickly wisked away.. I remember seeing her lifeless little body hanging limply form the nurses hands. Our son was in the room with us… in all the chaos of the quick delivery, there had been no time to make arrangments for him. All I kept thinking was “Dear God, please don’t let Nathan have to watch his sister die”.

 

We were surrounded on all sides by nurses rushing to care for me and our daughter. My husband called out to me through the chaos, telling me every detail of what was being done for our baby.

 

Helping Our Baby Breathe

“She’s starting to turn pink!” he said… “Now she’s moving her arms!”…

 

Then I heard the best sound in the world… like a small kitten crying out for it’s mother..

 

Emily CRIED!

 

And all I could do was thank God. Even if it was the only time I would ever hear it, I thanked God for letting me hear that little cry.

 

They began to rush her off the the Neonatal Intensive Care Unit (NICU). “Has she seen the baby?!?” my husband asked. And thank God he did.. as they rushed outt he door they held my beautiful little girl up for me to get a glimpse of before they took her away.

 

The following five weeks were the most exhausting, terrifying time I have ever had to live through. Our baby girl was a trooper… she tried so hard to breathe on her own. But in the end, she needed a little extra help and was put on a ventilator for several days until she was stong enough to breathe on her own. She lost alot of weight initially, she dropped from 3lbs 7 oz down to 3lbs 2oz. The drs assured us it was okay for her to lose weight at first, but it was still so hard seeing her get even smaller. She had several rough days while on the ventilator.

 

On the Ventilator

One night, her tiny body was filled with fluid. Every time they picked her up to reposition her, you could see the fluid shift from one side of her body to the other. Every 20 minutes or so, they would have to use a tube to suction fluid off of her lungs. When I laid my hand on her chest, I could feel her lungs slowly start to gurgle with each breathe. She pulled through, and like the little fighter she was, ended up breathing on her own within that week!

 

She began to slowly but surely improve. Each day she was gaining weight and growing stronger. The Dr. thought she was doing so well, that he moved her from the NICU to the Intermediate Care Nursery (INC). We were so thrilled! We were one step closer to bringing our baby home!

 

The First Time I Ever Held Her

Mother’s Day was very bittersweet for me. I spent half the day at home with my little boy, and the other half visiting my tiny baby at the hospital. I kept telling myself that it was all temporary, and that soon we would all be together as a family.

 

But I just couldn’t shake the horrible fear in the pit of my stomach.

 

I held Emily for hours that night. All the nurses kept telling me to go home and get some rest. But I just couldn’t… something didn’t feel right. Emily seemed so sluggish, she could barely open her eyes to look at me. And she seemed so bloated.. her belly was enormous. “She’s just growing and getting fattened up” the nurses laughed. “All babies are tired when they are growing”.

 

Finally, at 4am… I drove home. I cried the whole way. I knew the nurses were probably right. I just didn’t understand why I felt so scared and helpless. I was so overwhelmed, I pulled off to the side of the road and cried.

 

An hour and a half later… I received the call every NICU parent dreads.

 

Emily had gone down, bad. They were moving her back to the NICU. Emily was having what is called an “NEC scare”.

 

NEC is when a premture babies intestines are too fragile to handle the stresses of digestion. The intestines literally begin to die. If the intestines died, there was a very high chance that she would die too.

 

My Sick Little Girl

Emily was so sick, she looked like a shell compared to the baby I had held only hours earlier. That was one of the hardest days of my life. I felt so guilty for not listening to my gut instinct the night before.

 

Over the next several days, Emily battled the infection in her stomach. She did not eat for 5 days, an eternity for anyone, especially a baby. The infection in her stomach spread to her a bloodstream, a condition know as sepsis. She had two different types of bacteria growing in her blood. The dr.s started a 21 day course of very strong antibiotics. We all prayed that they had caught it in time.

 

The next day, they ordered a spinal tap to check Emily’s spinal fluid for any signs of infection. the dr. explained that very rarely, the bacterial infection can cross from the blood to the spinal fluid. If that happens, it is life threatening. It can cause massive brain damage as well as many other huge complications. Twelve hours later, we received the news we had been dreading.

 

The infection had indeed moved to Emily’s spinal fluid. She was diagnosed with Spinal Meningitis. Luckily, since they had taken every precaution, it seemed like they had caught it in time.

 

The next few weeks crawled by. Emily was so sick, but we saw the strength in her eyes. She wanted to come home as badly as we wanted her home! It was heartwrenching watching the endless ivs, heel sticks, and other tortures that only a NICU parent could understand. I had to help hold my baby down on more than one occasion while she was stuck over 5 times. I began to worry that even if she recovered physically, that she might never recover mentally from the endless amount of pain being inflicted on her. The nurses kept saying “Don’t worry, she won’t remember”. But nothing anyone said could take away the pain I saw in her eyes.

 

During that time, we also found out that at some point in the womb, Emily had suffered a stroke. Appearently, Emily had inherited the same clotting problem that I have. The same one that had taken the lives of so many of her siblings. She had developed a clot and it had caused her to have a stroke.

 

An MRI revealed significant brain damage. Unlike most neonatal brain injuries, there was not a definitive prognosis for our little girl. Some babies with such injuries show no signs of damage later on in life. Others are stricken with disabilties such as deafness and cerebral palsy. This was a very difficult thing to handle. The Dr. said that based on the findings on the MRI, Emily should not be able to move her right side at all. But she was exhibiting complete control of her right side! Our little miracle was surprising them all! The Dr. even said that the baby on the paperwork and the baby in front of his eyes did not seem to match!

 

She was so cooridinated in fact, that she surprised them all by taking a bottle all by herself! We were so proud! I cannot explain how happy it made me to see our baby girl eating and growing stronger again!

 

Emily's 1st Bottle!

After 21 days of antibiotics, and 34 full days of the NICU, Emily was finally released from the hospital! She was infection-free and weighed a whopping 4lbs. 11 oz!

 

FINALLY Leaving the Hospital!

Bringing her home was the most surreal experience of my life! It felt like we had won the lottery! Our beautiful little girl was finally HOME!!!

 

The past month has felt like a dream… falling asleep with my baby beside me is something that I will never take for granted. We still have many fears for our daughter. The thought of what lies ahead scares me to death. I worry about what disabilities she may face… if she will be made fun off at school.. whether she will ever be able to get married and have a family of her own… these are the questions that we don’t yet have any answers to.

 

All we can do is thank God for bringing her so far, and trust that he will carry her through the good times and the bad. Her life might not be perfect, but we already know that our little miracle has a PURPOSE. And that’s what truly matters.

Our Family ~ Finally Complete

24 Weeks.. Yay for viability!!!

Wow, I am so happy to finally be 24 weeks pregnant! This is such a huge milestone for us! Of course, their are “miracles” who survive before this point, but it’s just exactly that, A MIRACLE.

Obviously, we want our little sweetheart to stay put for much longer. But it sure does help me get through each day knowing that she now has a chance of survival.

I have been holding up pretty well. The past few days have me feeling a little bit nervous. I had my injection on Wednesday (the one to keep contractions away). But I am still having some. They are not really intense, but they are enough to make me nervous. My dr. said that if the “nature of the contractions change, go to the hospital”. I am trying to stay off of my feet and hope that it helps. So please keep us in your prayers.

Walter has been working really hard in her nursery… it’s really hard on him because of his back. But he’s just as anxious as I am to be able to get it set up for her! I am dying to be able to get in there and start “nesting”… her room is going to be so pretty!

Well, I will try to keep everyone posted about the contractions.
~Amber

9 Weeks Pregnant, What a Wonderful Thing To Be Thankful For!

Well, we had a little bit of a scare last week. I had some slight spotting on Friday and Sunday (after regular dr.’s hours, of course)

It wasn’t very much, but it was still enough to freak us out. Luckily, I own a fetal Doppler and was able to listen for our little one’s heartbeat. He (or she) sounded just fine. I was still really anxious to get to my dr.s appt though.

 

My dr. performed an ultrasound and said the baby looks great… it’s measuring perfectly on schedule and has a very strong heartbeat. He could see the source of the bleeding also. Apparently, the babies placenta is “low-lying” which means it’s at the bottom of my uterus. This situation corrects itself over time, as the pregnancy progresses it should move up higher. This is whats’s causing the spotting. He said it’s a common thing and I shouldn’t worry. But he does want me to take it easy the next couple of weeks until the babies placenta can “fuse better” as he put it. So no heavy-lifting (sorry Nathan), and no exercise.

 

As if I wasn’t going to put on enough weight over the holidays lol! Whatever it takes to make the baby ok is fine by me though. I go back for my next appt on Dec 16^th. I’ll be 12 weeks along by then. It’s crazy to think that I’ll be in my second trimester by Christmas! I really hope the nausea gets better soon. My morning sickness has been so bad that my Dr. prescribed a Phenagrin gel for me to use. He said it’s safe to use in pregnancy because it’s an antihistamine. I’m so relieved, there have been days when I couldn’t hold anything down till 9 or 10 at night.

 

Btw, the nurses think I’m having a girl. My babies heartrate is consistently in the 170’s and 180’s. They said anything over 140 is usually a girl. I guess we will see!

 

On another note, Happy Thanksgiving everybody! I am so excited about getting together with the family. I have seriously been craving Thanksgiving dinner since this pregnancy began, so I’m planning on gaining back all the weight I lost from the morning sickness lol!

 

 

The cutest baby ever!!!!

…besides Nathan at least!

 Seriously, how adorable is that!

 

 It’s amazing how quickly it is growing! It’s tiny heart was beating so fast, the technician measured it’s heart rate twice and it was 158 beats per minute (bpm). That is a lot faster than Nathan’s was, his was always in the 120’s. Everyone keeps saying that means it’s a girl, because girl’s heart rates are always faster. Some people say it’s just an old wive’s tale, but everyone in my family says it worked for them. So I guess we will wait and see! Walter says it looks like a girl lol. I told him that people are still saying that Nathan looks like a girl, so that doesn’t really count for much lol! I am just so excited, I don’t care what we are having, as long as it’s healthy!

 

 

 

BTW, here is what our baby looks like this week. It is an inch and a half long, but it already has every single part of it’s body that it will ever need. Now, it’s sole focus is on growing bigger and stronger! I read that baby’s at this stage have been seen sucking there thumbs and grasping there umbilical cords. It is so amazing!

 

I am so happy, I almost cried during the ultrasound. That little baby’s heart beating away was the most beautiful thing I have seen in a long time. As far as physically, I am absolutely exhausted with this pregnancy. My nausea is A LOT worse than it was with Nathan. It always hits in the middle of the afternoon. I am having a really hard time finding foods that don’t make me sick. I can handle anything with milk…. Cereal, ice cream, cream of wheat…. Ect. It stinks because milk is crazy expensive, and I go through about three-quarters of a gallon a day.

 

Please keep us and our little one in your prayers! And loads of babydust to all those still ttc!

THANK YOU GOD!!!!!

IT’S A BFP!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

It’s been about 24 hours since I found out, and it’s just now really starting to sink in! I am so happy, I really can not believe that the clomid worked so well for us! I almost feel bad, because I know so many people who have been on it FOREVER. We have had a very hard time getting a baby here too though. Now comes the scary part, making my bean stick.

I went to have all my labs drawn today. Of course, we won’t know anything till monday, but that’s cool. My doc has me starting the lovenox injections *fun*. I don’t care what it takes though, as long as  get a healthy baby.

For those who are curious, I got my BFP at 9 dpo. I took the test at 4am, because I couldn’t sleep and I just KNEW I had to be pregnant. It was so faint, at first I didn’t believe it. So I took another one about 6 hours later, and voila! Definitely positive

It sucked because when I found out at 4am, I had to just go back to bed and pretend nothing was up so DH wouldn’t catch on. I wanted to tell him in a cute way. So I had to hold it inside ALL DAY!!!!!!!!!!

When DH got home from work, I had taped a sign that said “I’m the Big Brother” on Nathan’s baseball cap. He was so excited! He took me out to a nice restaurant tonight to celebrate.

We are so anxious to be able to see & hear “tiny thomas”. I own a $400 dopler, so it will be alot easier not to worry when I can hear the heartbeat. It’s a really good one, it can pick up the heartbeat by 8 weeks. We have been through so much, I would’ve lost my mind when I was pregnant with Nathan if I hadn’t had that thing.

On another note….

Despite our good news, I had a very sad day today. I’m an area cooridinator and photographer for an organization called Now I Lay Me Down To Sleep . We provide free Heirloom Photography for babies who have passed away, or are very near to it. I see alot of sad things, ranging from stillbirth, to prematurity, to birth defects. For anyone who finds this morbid, please understand that these pictures are all these families will have left of their poor babies when they are gone. I became a volunteer because I have had the own agonizing experience of wanting pictures of my angel babies, and wanting something beautiful, that truly captured how much they touched our lives. We also provide free Potraiture (editing) for our photos. Words cannot describe the look in a mothers eyes when she is finally able to see an image of her child free of the bitter marks which death leaves.

Anyway, I got a call about a newborn boy 2 hours away who needed a photographer. I was so blessed to share an hour of his life with him and his family, he lived for far longer than he was expected, almost a full 8 hours after his birth. He was precious. It amazes me how much of an effect “touch” has on these babies. He would begin to lose his color and he would wimper, but if you cradled him or gently stroked his tiny arm, he would immediately “pink up” again. Saying goodbye was so hard. I held him and asked him to say hello to my babies for me.

A couple hours later, his Aunt called to tell me he was gone. He had passed away silently, nestled against his mother’s heart.

Even though I knew it was inevitable, it still hit me really hard. I guess being pregnant adds a whole new element to this, because as a mother it is hard to witness one’s worst nightmare.

But it is so worth it. I wouldn’t stop doing this for anything in the world. It is the most meaningful thing I have ever accomplished in life outside of being a wife and mother.

Well, there you have it. Tears of Joy and Tears of Heartache. All in the same day.

To find our more about NILMDTS, or to read about how one baby started it all, please visit www.nowilaymedowntosleep.org .

Drumrole Please!

My Beautiful Family

 For those of you who are curious as to what me and my family look like…… tada!

This is a picture of all of us as a birthday party, it was little Nathan’s first ever time on a horsey!

This pic is kinda old, I think this was back in March or April. I don’t have many of the current ”fancy” family pics uploaded on the computer. Hmmmm, I guess I had better change that.

We’re a pretty good-lookin bunch though, right?!?

Pee-Stick Update

Well, so far it’s still BFN BOOOOOOOOOOOOOO!!!!!!!!!!!!!

I’m trying to keep my head up, it’s still too early to call this one. Based on the first  positive O stick, I’m 11dpo, but based on the second positive test, I’m only 9dpo. I am soooo anxious, I just HAVE to be pregnant. I feel to funky to not be!!!!!!!!!!!!

I guess we shall see. I guess the sooner I get in bed, the sooner I can pee on another stick in the morning.

I will keep everyone posted.

Pretty pleeeeease God, give me two lines!

So as of today, I am 9 dpo based on my first positive opk. I’m 7dpo based on the second pos opk. Yes, I know. It’s ridiculously confusing.

I must admit, I have been testing already. Yes, I know it is ridiculously early. I’m just DYING to see two lines! Anyways, I’m getting down to the wire now. My earliest ever BFP was with my living son Nathaniel. I got a ridiculously faint positive at 7dpo… so faint that I didn’t believe it was real. But sure enough, the next morning, it was definitely there!

The latest I have ever tested positive was at 12dpo. What  drives me crazy, is when people doubt early positives by saying crap like, “oh, well you must have just ovulated earlier”. I will proudly stand up for all “early testers” out there by saying, THIS IS ABSOLUTE CRAP!!!!

I, like most people ttc, time sex and ovulation. So if these “doubters” theories were true, my eggs would have shriveled up and died by the time I did the deed.

Now I will also say that, I have known soooo many women who haven’t gotten BFP’s until 14dpo, 16dpo, or even later! So I guess the moral of the story is….

It’s not over until Aunt Flo rears her ugly head!

I am so confident that this cycle is going well, I am just scared to jinx it by saying it out loud! lol

Symptoms today:

• VEEERRRYYY crampy since last night, got progressively worse this evening… very similar to AF cramps
• Threw up today. (ok, I know there are tons of people out there who will say that morning sickness this early is impossible, but I swear that I’m like allergic to babies or something. I always get MS before 6 weeks. I told hubby that I am so miserable, I either have e-coli or I’m pregnant lol)
• I’m exhausted
• I spotted two days ago, and today

Ok, I realize that I’m still super early, and that all of these symptoms can be attributed to the truckload of meds I’m on (progesterone, parlodel, clomid, ect…) But it can’t hurt to stay positive, right?

Please pray that this cycle gives us a stick bean…or two, or three! lol

I’m just so tired of the ttc part, I’m just really ready to be pregnant again. I miss those first little flutters (which quickly turn into humongous kicks!) I miss seeing hubby talk to my belly and seeing the baby react to it. I miss knowing that I have another life inside of me. *sighs*

Bring on the babydust!

Rough Day

Well, last night, I managed to step on a gigantic piece of glass while chasing my 14month old son. This is the wierd part, neither dh or I have broken ANYTHING in months. On top of that, this huge piece of glass was laying right smack-dab in the middle of my kitchen.

Seriously, what the heck?!? It’s like something is out to get me. I shudder to think if it had been poor little Nathan who “found” it. Especially since he puts everything shiny in his mouth. *shudders*

My mom offered to lend me her crutches… but those require arm strength, which I have none of. lol

As far as ttc symtoms go…

Same a yesterday, achy feeling in uterus… it’s way too early to be feeling AF cramps, so I’m hoping this is a “sign”. Everything, and I mean everything, has made me cry today. Poor dh had to hug me when he got home. I HATE feeling like an emotional weepy person. I think it’s most likely the clomid. It’s so wierd how such a tiny pill can mess you up so bad.

I had better get a baby out of this.