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

Quick Picture Update!

Well, thank God week 22 is over. As of today, I’m 23 weeks… which is a MUCH better place to be as far as viabililty is concerned. Today has been kinda sucky… I’m having LOTS of contractions Of course, my weekly progesterone injection is tomorrow, so that should solve the problem.

Change of subject… I am friends with one of the coolest people on the planet! Long story short, my life outside of ttc has been pretty messy… I am currently not speaking with my parents (or not allowed to, as my husband says) because they are freakin horrible people and they stress me out way to bad. What really sucks, is they live literally 5 minutes away. I have been so upset lately because my mom has been making up false charges about my husband and calling the cops on him. So the cops were coming over, interrogating me, then interrogating my husband AT HIS JOB. The cops ended up laughing off the whole thing, they apparently see this type of thing alot.

Anyways, because of the family drama, I had pretty much written off having a baby shower this time around. I was so depressed about it, because I am SO old fashioned and love little get-togethers like that. For me, it’s not about the gifts, I just really wanted to celebrate this baby. Anyways, my awesome friend got together with my husband and planned me the most adorable surprise baby shower EVER!

I was in total shock, I thought we were just going to her house so that our kids could play lol! I got there and there were tons of people and my best friends! It was so sweet It meant the world to me, I guess you could say it kinda restored my faith in humanity. I can’t wait to post pictures… one of the girls took tons for me and she’s gonna mail me a cd of them.

In fact, the main reason I’m writing this is post is to give everyone a quick picture update! I feel so bad, because I had the most amazing ultrasound a couple weeks ago, but I never got around to posting the images because of all the insanity that started right after that.

These were taken at 21 weeks. She is so beautiful, I can’t get over it. She is starting to look a little more like Nathan, but her features are still mostly like mine The ultrasound tech said she is measuring a little bit ahead as far as weight… I guess she’s gonna be short & fat lol!

22 Weeks Pregnant & Scared to Death

The last few weeks have been pretty stressful and crazy. Everything had been going pretty well, the progesterone injections were keepig my contractions at a minimum. But things have been kinda gone downhill this week.

On Sunday night, I lost my plug (For those who know what that is, cool. For those who don’t, it’s probably better that I not tell you) The point is, at 22 weeks, that’s not a good thing.

I went in to see the dr. Monday morning. I han’t been feeling any “contractions”, I just felt really achy and sore. When he checked me, I was between 1 & 2 cm dialted. Apparently I was contracting on some level, and on top of that, I had an infection. He gave me antibiotics for the infection, and told me to stay in bed and come back the next day to see if the bedrest was helping. If not then I was headed to the hospital.

So I went back the next day (yesterday) and I was only a fingertip dialted, which is better. So it seemed like the bedrest and antibiotics were helping. I still feel achy & sore, so I’m supposed to continue the bedrest. If anything changes then I am supposed to go to the hospital.

I’m a total wreck, I’m so scared for Emily. At 22 weeks, the odds of survival are not great. There are miracles that happen, but I don’t want Emily to have to go through this. My dr. offered us steriods to develop her lungs faster… but still.

She’s just so tiny.

He also gave me a supplement that a study in Finland showed to stall labor by as much as 5-6 days. Our little girl needs as long as she can get… please, please, pray that she gets MUCH longer. I cannot imagine not bringing her home.

On top of all of this, Walter has 2 herniated discs and spinal stenosis (the nerve canal in his spine is being pinched), so he’s in agony. Being put on bedrest could not have come at a worse time. Lifting Nathan is simply not an option for either one of us. We have no family around here who are willing to help with Nathan, and all our friends work during the week. Walter can take FMLA and stay home to help me, but that will only protect him from losing his job, it won’t pay him. So that’s not an option either.

I’m just so thankful that God blessed me wih such a well behaved little boy. If he was like most kids, there would be no way for me to pull this off. I keep telling him that mommy will be able to play again soon… but I have to get sissy here safely first.

She’s the most important thing right now. We are just so close.

The Last 24 hours….

I just wanted to give everyone an update about the last 24 hours. Sorry if I’m too brief, I’m just really exhausted.

We went to the hopsital around 9 o’clock last night because I was “leaking fluid” (sorry tmi)

We were pretty terrified, I cried the whole way up there. It was so scary because I lost my other girls at 18 wks, then at 19 wks… and that’s exactly where I’m at now.

When I got there, they hooked me up to the contraction monitor and started checking to see what exactly was going on.

Thank the Lord, it turned out that it was NOT my water breaking!!! I have never been so happy to be wrong in my whole life! (Although now I’m kinda freaked out, cuz I have no clue what that was) lol

But I had been having some cramps throughout the day… not as bad as my usual ones, but still painful. The monitor picked them up, which caused some concern, so they checked me for dialtion.

They said it felt like I was about 1 cm, so I needed to stay the night and have a cervical ultrasound check in the morning to make sure that I was still closed on the inside at least.

Walter & Nathan were sad to leave me up ther by myself, but I promised to call if anything changed.

I stopped having the contractions around 2:30 am, and was finally able to fall asleep. My dr. came in around 8am and checked and said I had gone down to a “fingertip dilated”, but he said I don’t need to be dilating or contracting AT ALL at this point. I was kinda surprised that they were so concerned about the contractions, because they weren’t as bad as some that I have had recently and tried to ignore. So now I feel kinda guilty for not going before now.

Anyways, the ultrasound said my cervix is long and closed, which is good. My dr. is going to tlak to a perinatologist about putting me on progesterone injections to stop the contractions from occuring again.

I’m so glad he’s finally taking it seriously, I had told him a couple weeks ago that the contrax were bothering me, but he kinda blew it off as “braxton hicks”.

All in all, Emily looks great, and it looks like now I will be able to try something new to help keep her in for a while longer.

Goign to that hospital is always really hard on me… some of the best and worst memories of my life have happened there. Luckily, I was able to get the same nurse who went through all of the insanity with us when I was pregnant with Nathan. She is really awesome and knows our history… it helps so much when you have someone who understands.

I’m really sore and really exhausted, but VERY relieved and thankful to be home. I will be taking it easy for awhile. If I don’t, Walter will seriously chew me out! lol

~Amber

18 Weeks Pregnant!

It’s so hard to believe that I am 18 weeks pregnant. This past week has been amazing. Now that we have seen our beautiul little girl, it gives us the sense that we know her so much better now. It’s been so much fun shopping for little dresses and tiny little shoes for her, she is going to be the best dresses baby ever! lol

I’m so in love with her. It’s such a different experience, carrying another little girl. Nathan always seemed so “tough”, even throughout his pregnancy. Emily seems so dainty, even comparing their ultrasounds is remarkable! Her features are much more petite than his. I know everyone says that your baby’s will get bigger each time you are pregnant, but I seriously do not see her weighing as much as he did at birth. I was kinda worried that I wasn’t gaining enough with her. Don’t get me wrong, it would be awesome to not gain as much as with Nathan… I had to bust my butt to lose it all. But I actually weigh less now than I did when this whole thing started. I lost so much weight in my first trimester, but at my last dr. appt I had put on 3 lbs. She seems to be growing right on schedule, and her kicks are getting stronger every day, so I guess she is getting what she needs. I have been alot hungrier this week… like ridiculously hungry. So maybe she’s trying to give me a hint !

Well, for those of you who did not know, we had a scare two days ago. I was in the kitchen and stepped on a slick piece of paper, and my feet slid out from under me. I landed on my butt REALLY HARD. I cried and cried, I was just sure that I had hurt her. I got out my doppler and her heart rate was crazy fast, in the 190’s. I think it scared her as bad as it scared me. My dr. told me to take it easy, and I did. I had some contractions, but they were not consistent and got better after lying on my left side for a long time. So it shook things up a little, but all is well. It was terrifying though. I guess our little girl is tougher than we think she is.

Keep the prayers coming our way! ~Amber

IT’S A…!!!!!!!!

…….GIRL!!!!!!!!!!!!!

That’s right, “Tiny Thomas” is now officially Emily Alexandria Thomas!

 

I have been teary eyed ever since we found out… my heart literally felt like it was going to beat out of my chest! Our little girl is such a lady, she kept her tiny legs crossed for most of the ultrasound. But the second she uncrossed them, I knew she was a girl. Walter knew too, he squeezed my hand so tight! It was one of the most amazing moments of my life!

 

Our daughter is sooo beautiful! She is so petite and dainty. Her eyes look a lot like Nathan’s, but she has my chin and nose! She also has my ears lol!

 

It was so serele when they said it was a girl, I wasn’t sure how I would feel about it if she was. Of course, we knew that we would be soooo thrilled, but it was very bittersweet after losing three girls. Even more so because she looks exactly like one of our twin daughters, Racheal. And I mean EXACTLY. But when they said it, all the sudden everything just felt right. Yes, I am scared, but I have to believe that I will get to bring this baby home.

 

After the ultrasound, we went with Walter’s family to shop for baby clothes. We got the most adorable little dresses and tiny shoes! It was so amazing buying those little girl clothes for the first time!

 

It was really neat, because we were able to have both sets of our parents there for the ultrasound. Nathan sat in between them all like a good little boy. He is such a proud big brother. He even started clapping during the ultrasound!

 

I am so thankful to God for blessing us with another daughter. I am so happy, it all feels like a dream!

 

~Amber

17 Weeks Pregnant ~ The Night Before The BIG Ultrasound!

 Well, tonight is the last night that I will fall asleep not knowing whether I am having a son or a daughter. I am so anxious to see that baby’s beautiful little face tomorrow. I already love it so much, I can’t wait to have a name to go with this little baby. I was going through Nathan’s itty bitty baby clothes, and I got teary eyed thinking of putting those same little clothes on another little boy. At the same time, I can’t imagine the emotions I will feel if this is a little girl. It would be very bittersweet for us, after having lost our daughters.

I am just so happy that I am one step closer to KNOWING this baby! I love it’s little quirks, the way it kicks so much more than Nathan, the way it jumps when Nathan squeals too loud… and the way it follows it’s daddy’s voice. I got to feel the baby have the hiccups for the first time last week! It was so sweet! I remember how Nathan used to have the the hiccups ALL the time when he was in my belly! I felt so bad for him, because he would have them for sooo long lol!

 I will let everyone know as soon as we find out! I know there are alot of people anxious to hear! ~Amber

15 weeks & 3 days Pregnant!

I feel bad for not updating more often. Things have been really calm around here, which is a good thing.

We will find out if Tiny is a boy or a girl is 12 days! I am having such a hard time being patient, I’m dying to get in the nursery and get to work! I’m also really excited because it’s going to be a 4D ultrasound, and they are so awesome! When I was pregnant with Nathan, we got some absolutely amazing pictures and video of him when we had his gender ultrasound. Here’s one of my favorites.

I can’t believe he was ever that tiny. It’s funny because I look at them now and I’m like, “yep, that’s definitly my little man”. He still has the exact same features…. nose, forhead, chin, EVERYTHING! It will be so neat seeing what this baby looks like. I can already tell from our last ultrasound that it’s nose looks alot more like mine. Poor baby lol!

 Well, I have finally picked out the themes for the baby’s nursery. I’ve had my girl nursery theme picked out for like 5 years lol, but I was undecided about what to do if it is a boy. We had thought about putting him in Nathan’s nursery and making nathan a “big boy” room… but nathan REALLY likes his room and I don’t want to make him feel pushed to the side, ya know?

So even if it’s a boy we will be doing another nursery. This is what I picked out if it’s  boy…..

 And this is what I’ve chosen if it’s a girl……….

Anyone who knows me knows how much I love decorating, but it’s even better when it’s for a new baby!

Well, on another note, I have been suffering with some really aweful lower back pain. It really freaked me out at first, because it felt alot like “dilation pain”. But everything looks ok, I guess I’m just sore from everything shifting around in there.

My belly has gotten HUGE in the past couple of weeks! I still haven’t gained any weight, but at least I’m not losing it like I was. I was kinda worried, but I guess it’s just less for me to lose once the baby gets here. It is measuring correctly on all it’s ultrasounds, so I guess it’s getting what it needs.

It AMAZES me how much more active this baby is than Nathan! Walter couldn’t feel nathan’s kicks until 18 weeks, but he has been able to feel this baby since last week! It’s funny because the books all say it’s too early to feel it, and at my last dr. appt, even HE could feel it when he was doing the ultrasound! So much for science lol!

I’ll try to write more often…

~Amber