Pack Up Your Sorrows

Today I did not stay afloat. I let the current pull me into that dark sea again. It has been quite some time since I have felt this way. I don't even know if I can attribute it to any one thing. I suppose it's a plethora of not just my experiences these past few days, but of others as well. I feel I have been reminded over and over again lately of what can go wrong. Simply put...I'm scared and a little bit sad. There is Facebook group that I am a part of that has some awesome moms of little ones that have Ds around Camden's age. A few of these moms (myself included) have had a not so ideal past few days. Whether it be a hospitalization, unexpected test result, worries about upcoming tests or not knowing if something is wrong or not. These women have become a very important lifeline for me. I know I can turn to them for prayers and support. I also stumbled across a Facebook page for Cayden. It broke my heart. Again, I'm reminded of the horrible and painful things that can come with having an extra chromosome. Cayden was born with Ds and has had several complications since birth. He will not be here much longer. My heart aches for this family. I know I am blessed that Camden does not have serious health issues thus far. For the most part, I try not to think too much about what the future brings. "Why let the worries of tomorrow rob you of your joys of today?" Today is just a bad day. Bad days are going to happen. It's up to me to pick myself up and keep going.

Earlier today I glanced over at the nightstand and saw a little booklet I have called The Daily Bread. It was open to a page titled Pack Up Your Sorrows. Coincidence? I don't think so. I believe God was trying to get my attention. I believe He was trying to remind me that there is never a burden or sorrow too heavy for Him to bear. I need to release it all to Him and let go because this is out of my hands. Tomorrow WILL be a better day!

 

 

 

 

Going Down the Wrong Pipe!

The week would not be complete if we didn't have some type of appointment, right? Yesterday we headed to Cook Children's for Camden's swallow study. I have been worried about him aspirating milk into his lungs ever since he was learning how to eat in the NICU. He was (and still is) a very uncoordinated eater. There are a lot of gulps, gags, squeaks, gurgling and any other noise you can think of that goes on. This doesn't happen every time he eats, but enough to make me think that something is just not right. Now, I will be the first to admit that I get a little crazy and obsessive with research. So, when we determined that Camden had a floppy airway while in the hospital...I started googling. Bad, bad, bad idea! Well then I really went to crazy town! I had Camden diagnosed with everything possible...not good. However, when I did read that aspiration is common with floppy airways, I though maybe I wasn't so crazy anymore. Then I asked if we could do a swallow study (maybe 4 or 5 times) before he left the hospital. I was reassured those 4 or 5 times by different people that he was NOT aspirating and that it wasn't necessary. Okay, I'm a little paranoid, I get it. Home we go and I continue to worry. Week after week I sit there feeding him----which is not an easy task---still wondering. Finally I just call Dr Dyson and just ask for them to order one. Maybe it's because I work there, or maybe it's because they trust I know what I'm talking about, either way it was ordered pronto! At least we can put all of this behind us and I can stop going to crazy town. Well, I may be borderline insane...but he IS aspirating! I mean we didn't even get past one swallow. If you don't know what happens in a swallow study, let me explain it. They strap your baby to a little chair sitting upright in an x-ray room. You then stand in front of your baby so you can feed them while the radiologist and SLP (speech language pathologist) watch on the screen how the barium goes down. They use barium because it's a type of contrast medium that will show up on x-rays. It must not be to bad, because Camden gulped it down! Fluoroscopy images are taken as they drink the barium. We tried thin consistency first, which would be the same as formula. I give Camden the bottle, he takes one drink, and then I hear the radiologist say STOP! Um, okay...what did I do wrong? I didn't do anything wrong, it just went down the wrong pipe. Fail on the thins. You then go through different consistencies to see which ones they can drink without aspirating. We found out that Camden can do semi nectar thick liquids. So now we have to thicken all of his bottles. Needless to say, I am angry frustrated. Frustrated at myself for not advocating for my son and pushing for the swallow study while he was in the NICU. Frustrated because this is one more obstacle that he has to hurdle. In the big scheme of things this is not a big deal...I know that. Camden has other buddies that are enduring far worse. However, it still stinks! I thank God for not letting Camden get pneumonia from weeks of food going down the wrong pipe. We go back in 2 months for a repeat swallow study and hopefully he will have gotten strong enough that he can go back to regular liquids. If not...we will continue to do what we need to do. We will keep plugging along.

Taking a snooze before the big test

 

 

Sorry for the quality, my phone doesn't have a flash.

 

 

Strapped in and ready to go!

 

 

It's great that they have video games to entertain Carter!

Puke, Puke, and More Puke!

I know there is some type of evil stomach virus going around, but this is getting downright ridiculous! Carter has had this so called virus 4 times in the last 2 weeks. I'm starting to think there is something else going on. It's always fun to wake up in the middle of the night in a puddle of puke. I mean who wouldn't want to do this every few days? It's especially awesome when it's coming out the other end as well! Gross, I know. Since Carter has been sleeping with us, we get to all experience this wonderfulness. Last night was no different. It was about 3:30 am and I hear "Mommy...I need to throw up!" Well this time I had warning and I was not about to be covered in smelly, chunky vomit. So, as the great mommy that I am, I scream for dad to wake up and kind of throw Carter to him. Hey, I have a newborn to take care of so I figure dad can handle the big boy. At least this time he was able to make it to the bathroom in the nick of time. No mess to clean. I already know that this will continue for approximately 3 more hours, because it always does without fail. We get the big green throw up bowl (that's what it's called now) and all go back to bed. Carter continues to wake up every 15 minutes to dry heave for the next 3 hours. Then it's done. I don't understand it, and I don't like it. I feel sorry for my son that he has to go through this every 3 days. If it happens again, we may have to see what in the world is going on cause I'm pretty sure it's not normal to keep having a "stomach bug" every few days. Ugh, it's no fun. On the other hand, Camden has managed to stay well through all this nonsense! I love that I have nothing new to report in regards to the little one, because that means everything is normal right now. We do have a swallow study at Cook Children's on Monday so pray that all goes well and I will keep you posted.

Please keep Camden's friends Evan and Kennedy in your prayers. They both are wee little and had open heart surgery recently and both have had unforeseen complications arise. These little ones are fighters and have already had to endure so much in their short lives.

Feeling great during the day....

 

 

 

The "green bowl"

 

 

At least this one feel good!

Matters of the Heart

To say that my life is now sunshine and rainbows and I don't think about Down syndrome would be a lie. I would like to be able to tell everyone that I have come out on the other side with grace. I am trying. The wounds are still there, healing little by little everyday. Today I felt a familiar twinge of pain that I felt in the beginning. We had three doctors appointments today with one being for myself. I had my six week postpartum check up with my OB (if you're doing the math, yes, it has been 12 weeks...I'm a procrastinator). As I sat waiting to see the doctor, I saw what seemed like a hundred pregnant women. All with smiles, some holding snapshots of their tiny munchkins, and some looking like they were ready to have their baby right then and there. Then it came...the strong current trying to pull me down into the dark sea. The same dark sea that I was trapped in for weeks gasping for air, reaching for a hand, trying to paddle to shore. For a moment I was jealous. Perhaps it was because I never got to enjoy my third trimester? Or maybe it was because they were going to get a perfect healthy baby. I don't know. I know it's wrong. I am not perfect. This time was different though...I was not pulled under. I managed to stay afloat just long enough to look down at my perfect son sleeping in his car seat. Oh how I love this boy! Once again I remind myself, we will be okay.

"Remember not the former things, nor consider the things of old. Behold, I am doing a new thing; now it springs forth, do you not perceive it? I will make a way in the wilderness and rivers in the desert." Isaiah 43:18-19

Now that I have served myself some cheese and wine at my pity party for one, lets get down to the important stuff. Camden had his weekly weight check today and he weighed...wait for it...8 lbs 11 oz! He is up 9 ounces from last week which is wonderful. This means we can stop doing our weekly weigh ins! Hooray! Now we won't have to go see Dr. Marsh until his 4 month check up.

The next stop on the doctor train was the cardiologist. This one always makes me nervous. For those who don't know, Camden has a VSD (ventricular septal defect). A VSD is basically a hole in the heart. It's an opening in the lower chambers of the heart, allowing oxygen-rich and oxygen-poor blood to mix. It is classified as small, moderate or large. Camden's is large (9 mm). However, there is a flap of tissue covering part of the whole making it more of a moderate sized VSD. A small VSD usually never requires surgery as it causes no problems. A large VSD pretty much is always surgically corrected. The moderate ones are tricky. Some close, some do not. Some cause symptoms (tiring easily, sweating when eating or during activity, fast breathing) and some do not. Camden's VSD has not caused a problem. Dr. Case feels pretty confident that as Camden grows the tissue will grow as well and eventually close the hole. This is wonderful news!
No, no, no...this is fantastic news!!! There are no guarantees, but we will take what we can get for now. So for now, we are in a wait and watch approach. We will go back in a month for another echocardiogram. All in all, a great day!

Getting ready to see the Cardiologist and hoping for good news!

 

 

 



Look how big I'm getting!

 

 

 

Enjoying some good ol Chinese food afterwards

 

 



 

 

 

People First Language

This is something that I have been thinking about a lot lately. People First Language - putting the person before the disability. I have read about this on almost every blog I have come across. At the beginning, I wasn't particularly bothered by one's lack of knowledge on PFL. I heard it countless times..."Down's kids, "These kids", "Ds babies". I think you get the point. Medical professionals are the worst about this. They feel a need to clump my son into a group that is defined by its diagnosis. He is no longer Camden...he is a Ds child. As more time goes by, the more I understand why this is a problem. The more I hear it, the more defensive I get. I don't want people to see my son as a diagnosis. Camden may have Down syndrome...he is NOT Down Syndrome. Something I read on a blog a while back (I wish I could remember which one so I can link it) explained it well. When a child is diagnosed with leukemia you don't refer to them as "the leukemia boy/girl". You simply say the child with leukemia. The same applies here. Ds does not define Camden. He will have his own personality, abilities, strengths and talents just like a typical child will. I am not naive, I know that Camden having Ds will make things more difficult for him. I know he will have to work harder (much harder) just to achieve the things you and I take for granted. I know that there are health risks involved. I also know that he is a person first.

Now please do not think that you have offended me in any way. Don't try and go back and remember if you have said the wrong thing to me. I am only trying to educate. I will be the first to admit that I am quite certain I have used the phrases I mentioned above. I have taken care of many children with special needs (including those with Ds) and I know I have probably said the wrong thing many of times. So, for future reference, Camden is NOT:

-Down syndrome
-A Down's baby
-Downsy
-A Ds kid
-One of these kids

Camden is just Camden, and he happens to have Down syndrome.

On a side note, a few people have told me that they couldn't comment unless they were signed in to some sort of acct. I think I have fixed this to where anyone can comment, hopefully!

What is Down Syndrome?

I know some of you may not know what Down Syndrome is so I thought I would take this opportunity to tell you a few things.

-In most cases a person has 23 pairs of chromosomes inside their body, half of which are inherited from each parent. Down Syndrome occurs when an individual has a full or partial extra copy of chromosome 21. This genetic material alters the course of development and causes the characteristics associated with Ds.

-Some common physical traits of Ds include: An upward slant to the eyes, low muscle tone, a single deep crease across the palm of the hands, and small stature to name a few. An individual with Ds may possess some of these characteristics to some degree, or not at all.

-One in every 691 babies are born with Ds in the United States, making Ds the most common genetic condition. Approximately 400,000 Americans have Ds, and about 6,000 babies are born with Ds in the United States each year.

-There are 3 different types of Down Syndrome: trisomy 21 (nondisjunction), translocation and mosaicism. Nondisjunction, or trisomy 21, accounts for 95% of cases.

-Down Syndrome occurs in people of all races and economic levels, though older women have an increased chance of having a child with Ds. However, due to higher birth rates in young women, 80% of children with Ds are born to women under 35 years of age.

-Due to advances in medical technology, individuals with Down Syndrome are living longer than ever before. In 1910, children with Ds were expected to live until age 9. Today, as many as 80% of adults with Ds reach age 60, and many live even longer. More and more Americans are interacting with individuals with Ds, increasing the need for widespread public education and acceptance.

-People with Ds have an increased risk for certain medical conditions such as: congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Ds lead healthy lives.

-All people with Down Syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.

-Quality education programs, a stimulating home environment, good health care, and positive support from family, friends and the communicate enables those with Ds to develop their full potential and lead fulfilling lives.

(All the information above was taken from the ndss website. )

 

 

 

And of course, some pictures!

 

 

 

 

 

 

 

 

 

 

 

 





Birth Story Part 2

I spent two hours in recovery before I got to see my little man. Since my legs didn't want to cooperate for a while (spinal and an epidural) I was wheeled away on my bed. When I arrived to the NICU and saw Camden on the bed warmer I was instantly smitten. Here was this tiny human being breathing on his own and adapting to this outside world. He was beautiful! He needed no ventilation, cpap, or even a nasal cannula. He was a fighter! He was a Hill! The neonatologist explained what would happen over the course of the next few weeks and all in all said he was doing great. He had a feeding tube down his throat to help him eat and some IV fluids going. I could definitely deal with that! Then before he walked away he said, "I sent some genetic tests off due to his dysmorphic facial features." Huh? Come again? Looking at his tiny face, all I saw was perfection. "What do you mean?" I asked. He proceeded to talk to me about his eyes and his nose...flat nasal bridge...epicanthal folds. I still wasn't comprehending it. Maybe it was because of the drugs, or maybe looking back I just didn't want to listen. After he walks away I ask the nurse what on earth he was talking about. "They are testing for Down Syndrome" she says. My mind is in a foggy haze and I still don't understand. All I know is that I want to hold my precious baby boy and tell him that his mommy loves him and that everything is going to be okay. Looking back on those moments, I realize that that was probably an unsuitable way to tell someone that their newborn baby has Down Syndrome. Don't misunderstand, I absolutely love my NICU team. They were lifesavers during the most difficult time of my life. However, I will give a little bit of advice. I think it would be better to say something like "You're baby is doing great. He is perfect. There are some features that make me suspect Down Syndrome and I would like to send some testing off." Telling me that my baby has dysmorphic facial features makes it seem like he is some odd little human with a misshapen face. I am a nurse, so I know what dysmorphism means. At that moment I was a mom, not a nurse. I didn't understand what anything meant. Then to not further explain and just walk away is bad bedside manner. How do you leave a mom with a statement like that? Somehow everything that just transpired was quickly put out of my mind when I was asked if I wanted to hold my boy. As I held him and felt his soft skin against my chest, the world disappeared. There was only that moment. The moment between a mom and her newborn child. The unconditional love that binds you for eternity. He was perfect.

"For this boy I prayed, and the Lord has given me

my petition which I asked of Him." - 1 Samuel 1:27

 

 

 

 

 

 

After spending some time with Camden, I was then wheeled off to postpartum. There my husband and mom were waiting for me and I was exhausted, emotionally and physically. Richard was not with me when I was told about the testing for DS so I was the lucky one to break that news to him. He basically had the same reaction as me and didn't understand. He began to worry and I told him that it was going to be okay and that they were probably wrong. I actually had put it out of my mind and tried to forget about it. We were told it would take a week for the results and I just didn't want to think about it. The rest of that day was a blur. I was feeling pretty sick and was given some Phenergan and I slept the day away. Richard took my mom down to go see Camden while I napped. When they returned my husband seemed relieved and told me that he wasn't worried about DS. Apparently when my mom entered the NICU some of the nurses said "Oh, that explains it". You see, my mom is Korean. I am half Korean which makes Camden a quarter. They were telling my husband and mom that they did not know that Camden was part Asian. Now the upward slant to the eyes and flat nasal bridge make a little more sense. My mom would later tell me that all Asian babies look like that when they are born. What a relief! The rational side of me knew that Camden was only 1/4 Korean so his features would not be that prominent. Then again maybe they would? I think in the back of my mind I already knew. My mom and husband would continue to believe that he did not have DS. I on the other hand would spend the next several days studying my baby from head to toe. I would look at his eyes, his nose, and his ears. It was inconclusive. I would study his palms looking for a palmar crease...he didn't have one. I looked at his feet trying to determine if he had a sandal gap (a big space between the large and second toe). Hmmmm, maybe but that can be "normal" in typical babies. I asked my step mom (who is a Pediatric Nurse Practitioner) what she thought when she came to see him. She showed me reasons why he might, and reasons why he may not. I could always see in her eyes though that she believed he did. This would continue day after day until the test results came back. Camden's feeds were increased daily and eventually the IV fluids would be discontinued. His bilirubin was a bit high, which is not uncommon for preemie or full term babies, so he would spend time on the bili light blanket. He was my little blue glow worm.

 

 

 

 

 

 

 

 

 



 

It is now Monday December 3rd, exactly one week since Camden was brought into this world and one week since the tests for DS were sent off. I knew the results would be back soon, but honestly I really didn't think about it because we had all decided he didn't have DS. I was at the hospital for his 9:00am touch time and he was having an echo cardiogram done. They had ordered one due to a heart murmur that was still present. I was not worried about this because I knew it was probably not a big deal. I figured it was a PDA that had not closed yet. Hah, little did I know at the time! I remember putting Camden back in his isolette  to get ready to leave. I hear one of the nurses call down to the lab asking if his test results were back yet. I decide to hold him a little bit longer so I could wait for the results and be done with this whole mess. What happens next will be forever engraved in my mind. I am shedding tears because I feel so sorry for that woman who is about to hear the news that will forever change her life. The news that would bring insurmountable pain for weeks to come. I will always remember Dr. Foster walking over to me and saying "Mom, he does have it, I'm so sorry". I can't hold back the tears. They come pouring out like a flood. I can't describe the pain that I feel. It feels as if someone has punched me as hard as the could in the gut. I don't know what to say or do. She rubs my back in an effort to try and console me. I look at this little boy and he no longer feels like he is mine. I feel like my baby is gone. My perfect baby boy that grew inside me for all those months is gone. He has been replaced with this baby that I am holding. I don't know what to do except kiss my son and put him back in the isolette. I feel bad for the nurses that are there that day because you can tell they don't know what to say. I walk out of the NICU wiping my eyes and meet my step mom outside to go back to their house. I tell her the news. I am inconsolable and she starts to tear up. I call my husband on the ride home and tell him the news. His response was "You're kidding me". Nope, definitely not joking here. I don't even know what was said next. When I get back to my dad's house I just want to lock myself in a dark room and cry. It's hard to keep it together when you have a three year old boy that needs you. I tried my best to put on a happy face so I could take care of my son. When Carter would nap, I would cry. I have never cried so hard or so much in my entire lifetime. I was grieving the loss of my son. There was this empty hole inside me and it hurt...oh it hurt so bad. I felt guilty for wanting another baby. I worried my husband wouldn't love Camden the way he loves Carter. What if he never accepts him? Would he hate me for doing this to our family? What about Carter? I wanted so badly for him to have a sibling to grow up with. Now what have I done? I let him down. He now has a special needs brother that he will resent for the rest of his life. What I am I going to do? I can't do this! I can't raise a special needs child! Why me? My life is over. I am heartbroken beyond repair. Will I love this baby? Will we have that bond that only a mother and her child knows? Next comes the worst thoughts of all. I don't want this baby. I want to go back and be pregnant when life was good. I want my perfect baby back. I want it to be over. I just want to go back to my life with Carter and Richard and pretend this never happened.

These are thoughts that I have not shared with anyone until recently...not even my husband. I am ashamed of myself. How could a mother think or feel that way about her own son? I can't take it back...all I can do is move forward. It was a difficult time and was even harder because my husband was not with me. He took it hard too. I would never know how much because this is something he has never talked about. I think we had to process through our thoughts and emotions on our own. I remember talking to him that evening we found out and he was angry. He was angry at everyone and everything. We didn't talk much after that until the next day. Day after day I would continue to go to the hospital to see my boy. The motherly instincts were always there. I wanted and needed to go see him and take care of him. Then I would get back home and the darkness and pain would once again take over. Tears continued pouring out, my insides writhing, and sleepless nights. I became obsessed with the Internet trying to find all the information I could about DS. Most of the time it was just depressing. Countless medical conditions and learning disabilities. It was all the same. Then I remember seeing a link to a birth story on a blog by Kelle Hampton. I started to feel somewhat better just knowing that others have been there. I started to feel better because those that have been there seemed to be doing okay. In fact, they seemed to be doing great! I continued to read blog after blog feeling more hope as each day passed. I truly believe that God does not make mistakes and this was no accident. There is a reason that this boy was brought into my life. Several people said that Richard and I are special people and that's why we were chosen to be Camden's parents. No way is that true. I am not special. I am no more special then anyone I know. Camden is special. He was given to me to change my life. God knows that I needed to fix something that was broken in me for a long time. He knows that I needed to slow down and learn to appreciate each moment in life. He knows that I needed to open my eyes to what's important. I am blessed to have a wonderful husband who will be the best father for our boys. My husband would become my rock. He is the type of person who only dwells on things for a day or two and then moves on. This is what he did. He decided it was time to move on and start our lives. He fell in love hard with our son and never looked back. I still am on this roller coaster ride of emotions, but I will tell you that as each day passes I am closer to getting off. I am totally and utterly head over heels for my son...for both of my sons.

 

 

 

 

 

 

 

"You will have happy days. God will turn your darkness around.

He will give you beauty for ashes, joy for mourning." - Joel Osteen

 

 

 



Camden stayed in the NICU for a total of 54 days. For the most part it was all about growing and learning to eat. He did have a time where he needed oxygen for a couple of days due to difficulty breathing. We are still not sure what caused all that, but he was fine after. His biggest challenge by far was learning how to eat. Oh my, that was frustrating! I honestly thought at one point that he would never get it and we would be going home with the NG tube. Don't get me wrong, that wouldn't have been that bad compared to what others have been through, but it certainly wasn't ideal. For weeks he would only take 5-20 ml per feeding and that was only about twice a day. We had a long way to go. At the beginning I assumed we would only be there for about 4 weeks. Never did I imagine it would be 7. Every day I spent up at the NICU I felt like it was my second home. I was still staying at my dad's house at this time since it was only 10 minutes down the road. This way Carter would be able to stay with me too. I had a lot of time to make up for from being in the hospital for 3 weeks. Richard would make the 2 hour drive once or twice a week to come see us. I know that man must have missed his family something awful! He is pretty self sufficient so I'm pretty sure he managed quite well. Each day became monotonous. Go to the hospital at 9:00am and 3:00pm. Some days it was 6:00pm instead of 3:00, but each day was the same. Bath days were Sunday, Tuesday and Thursday so I would go a little early to bathe my boy. The nurses and physicians became friends. I learned about their families and what was going on in their lives. We sat and talked and it was nice to pass the time. They put up with my craziness, and believe me I was crazy, and genuinely loved my son. I will be forever grateful for everyone that cared for us! The week leading up to Camden's discharge he started to eat more. He was now 6 pounds and getting stronger each day. I remember coming in on a Wednesday and being told that he will probably leave Friday. What? Really? I never thought the day would come! Well that Friday came and we were discharged. It was very surreal. You become so accustomed to a new environment and it was hard to believe that it was time to go. Although I was anxious and a little scared, I was ready to take my boy home and be a family. We said goodbye to our wonderful new friends and left to start a new chapter in our lives.

 

 

 

He loves bath time...can't you tell?!

 

There is nothing like snuggle time!

 

 

 

Love these girls! They are amazing!

 

Our attempt at a photo shoot.

 

 

 

Goodbye NICU and goodbye to our new friends!

 

 

 

 

 

 

 

 

 

 

 

 



Birth Story Part 1

It was November 2, 2012. Richard was going out of town to the deer lease because it was opening weekend for deer hunting. He would be gone for a few days so I thought I would take that opportunity to go visit my dad and step mom. Their house is a little over 2 hours away so it was kind of like a mini vacation. So I pack up my things and grab my three year old and off we go. I was 28 weeks pregnant and feeling pretty good.

For the most part, the pregnancy was pretty uneventful. It felt different than my first, but I couldn't really explain why or how. I was always worried about a miscarriage or going into labor early. I even remember having a conversation with my friend D'ann at work asking her about her preterm labor experience because I just felt something was off. I guess there is something to be said about women's/mother's intuition.

We get to my dad's house that Friday and just hung around the house and visited. On Saturday Carter started to feel sick. He developed fever along with a nasty cough. The poor boy was miserable! He was very clingy and wanted to be carried everywhere and let me tell you that boy is a lug! I finally got him to lay down in bed and that's when I started having pains. It's hard to describe the pain. It didn't feel like contractions so I wasn't really worried about the baby. Laying down didn't help nor did walking around. I finally decided to go lay down with Carter hoping that I would just fall asleep. That's when I thought I peed in my pants. It wasn't a lot, just a trickle. My water broke with Carter at 37 weeks and it was very obvious that that's what had happened. That's not what it felt like this time. So I got up to go to the bathroom and changed my clothes. I lay back down and it happens again. Now I'm just confused as to why I am peeing all over myself! Off to the bathroom I go again. This literally happens about five or six more times before I finally realize that my water had broke. I think I knew at the beginning, but I was in denial. I was only 28 weeks pregnant and this surely wasn't happening to me! I wake up my dad and step mom and off I go to the ER with my dad. We end up at Medical Center of Lewisville which is closest to my dad's house with a level III NICU. I'm taken to Labor and Delivery and things start to happen fast. I don't really know what I was expecting, but it was not what happens next. My nurse explains to me that she is going to start me on Magnesium Sulfate to stop preterm labor. Now I'm scared. I only know what D'ann had told me about her experience with it and it was enough to know that mag sulfate was evil! They start the medication and instantly I am more miserable than I have ever been in my entire life! First the burning starts. This burning spreads through every ounce of your body. You feel as if someone has set you on fire. Then the nausea sets in. I remember hanging my head off the side of the bed dry heaving while my body is dripping sweat. Then you feel as if a semi truck has just run over you. You feel beaten, heavy, lethargic. Once the bolus dose wears off and they get it to a lower level there is some, not much, but some relief. Then they tell me that I have to be on it for 48 hours. What?! 48 hours of this misery? Okay, if this is what is necessary to stop this baby from coming right now, let's do it. All I keep thinking is that it's too soon for me to meet my baby boy. It's way too soon. I get my steroid shots and then would get another one in 24 hours. The OB explains to me that most women will deliver within 72 hours of their water breaking and if they don't it will be within the next few days. He said our goal was to make it to 34 weeks at which point baby automatically comes out because the it becomes to risky for him to stay inside.  Of course it's very rare for one to make it that long, but it does happen. That was our plan and I would begin to pray hard that we would make it just a few weeks longer. I make the dreaded phone call to my husband to come back. So much for deer hunting this year. He would then start the six hour drive to the hospital. The bad thing about being at this hospital was that our home was two hours away. I chose not to transfer to the hospital where I would have originally delivered because being here meant that my dad and step mom would be able to keep Carter while Richard worked. So for the next few weeks my husband would make the drive back and forth a couple of times a week. Each day that went by was a blessing. I thanked God for every extra day my little boy could stay inside. I was on strict bed rest except for shower privileges. I would sit in that hospital bed for the next three weeks. My daily routine was: Wake up at 7am, watch the news, eat breakfast, take a shower, get on the Internet,eat lunch, watch reruns of Sex and the City and some Food Network, read a magazine or book, eat dinner, watch more TV and go to bed. That's pretty much how it went everyday. Of course some of that was taken out when visitors would come. I got to see Carter almost everyday and that was a lifesaver! I have never really been away from that little boy and it was hard. He was having a good time at Grandpa and Nana's and I knew he would be okay. We spent Thanksgiving in the hospital and I was glad because it meant that I was still there and Camden was still inside. We celebrated every week that passed and I thought just maybe I could actually make it to 34 weeks! I think even the doctors were surprised that we were still hanging on!

He was always the highlight of my day!

 

 

Carter was excited to make the posters, but not

so much about having his picture taken!

 

  

 

This would be the last poster we would make.

 

 

 

November 24th rolls around and at this time I'm 31 weeks and 4 days. It's only by God's will that we have made it this far and I still give thanks for letting our baby grow just a little bit longer. During the afternoon I start feeling contractions. I remember calling the nurse and saying that something just doesn't feel right. She explained that it was probably just round ligament pain and that it was normal. I know what "stretching pains" are and this wasn't it. These were contractions! I am hooked up to the monitor and sure enough I'm contracting every 2-3 minutes. The baby's heart rate keeps dropping. I'm given oxygen to help increase the blood flow to the baby. I am frozen, terrified, anxious and worried. I start to panic and the tears form in my eyes. This can't be happening now! I'm alone. My husband is 2 hours away. Even though I have had 3 weeks to prepare for this moment, I am not prepared. I am given a shot of terbutaline to stop the contractions. I am told that if this is true labor that they will not stop and I will be having a baby. I'm crying and shaking now. I still feel like it's too soon. 31 weeks is way better than 28, but it's still too early. I call Richard and he heads to the hospital. My step mom comes to keep me company. An hour later the contractions stop. They do not start again. We are not having a baby tonight. What a relief! Richard goes back home the next day. Saturday starts off the same as all the other days. The OB tells me we are walking a fine line between whether Camden is safe inside me or not. He says we will wait and see what happens the next couple of days. The afternoon comes and the pains start again. I am contracting again. It's not constant and there is no pattern. The baby's hear rate drops again. I'm put on oxygen again. A C-section is scheduled for the next day now which will be Monday. If my contractions get closer together we will do it today. Richard comes back to the hospital so we can make sure he is there in case the baby comes today. I would continue to have contractions and stay on an oxygen mask until Monday morning. 7:30am rolls around and it's show time! I can't believe today is the day we are going to meet our baby boy! I'm scared but excited. I get my spinal and the cutting begins. "We are pulling him out now" I hear the OB say. All I kept saying to my husband is "Please let him be crying! That way I know he is breathing!" They pull him out and we hear the most amazing sound in the world...his cry! I only get a glimpse as they whisk him away to the other side of the room for the neonatologist and NICU nurses to work on him. I hear them say his APGAR scores are 9 and 10 and I couldn't be more thrilled. He is breathing on his own and needs no support! I cry tears of joy and relief. My husband waits by our boy as I am being stitched up. He would accompany our baby to the NICU while I would have to wait until later. As hard as it was not to be able to hold my boy, I praised God for an uncomplicated delivery and a healthy boy. The three weeks in the hospital bed leading up to this moment was nothing. I would do it again in a heartbeat to keep my baby inside a little longer to get stronger. It was a great day!

 

 

 

Camden Reese Hill

November 26, 2012 8:00 am

3 lbs 5 oz    16 3/8 inches long

 

 

 

 

 

 

 



 

 

 

Feeling Better

Yesterday was not a great day. After Camden came home from the NICU I became obsessed with keeping him well. When I say obsessed, I mean over the top borderline crazy obsessed. I felt like I was constantly saying to my three year old, "Don't touch him! Wash your hands! Stop sneezing around him!" Poor Carter, he just wants to love on his baby bubba! We are in the midst of one of the worse Flu/RSV seasons there is and I am just paranoid. Well you know where that got me? Absolutely nowhere! I woke up at 4am to feed Camden yesterday and the poor boy could not breathe! He is always snorty ( supposedly that's normal due to narrow passageways, blah, blah, blah ) but he was REALLY snorty yesterday and gasping for air. There is nothing worse than looking at you child and seeing the look of sheer panic on their face! After calming him down I was able to feed him some and he started to fall asleep. I called the pediatrician's office as soon as they opened and made an appt. They did and RSV test and it came back negative, thank goodness! His oxygen saturation level was 90-91%. He is normally 99-100%. Since he was still eating and keeping his O2 levels around 90% there was not much else to do. I was just thankful that we could go home and that he didn't need oxygen. He has a "floppy airway" issue and any illness makes it so much harder to breathe. I am happy to report that after using good ol home interventions,  he is feeling much better today! I need to realize that I can not prevent everything! In trying to do so I have only stressed myself out and hurt Carter's feelings (that is exactly what he told me). God in in control, not me!

Poor boy was not feeling it yesterday!

Weight check and Pulmonology

Since Camden was a preemie we have had to do weight checks at the pediatrician every week he has been home. Today was weight check number four. I thought today would be the last time but no, we go back next week. Sigh. It's not that big of a deal, but since Camden has DS and was a preemie he gets a whole slew of doctor appts. I might add that we live quite a distance from all of these doctors. Even when it's just a weight check, it feels like a lot. Anyhow, the good news is that Camden weighed in at a whopping 8 lbs 2 oz! Woot Woot! This is HUGE considering we started at 3 lbs 5 oz. We have been lowering his calories week by week to get him on the regular 20 calorie formula. Yes, we formula feed. I tried nursing and it just didn't work [more on that later]. If he gains well on the 20 calorie we can stop weight checks!

 

 

 

 

 

 

After the visit to the pediatrician we traveled on over to Cook Children's Medical Center for Camden's pulmonology appt. This referral was made so we could continue getting the Synagis shot. Camden qualifies for this because he was a preemie and has a congenital heart defect [more on that later]. Synagis is a shot that is given to babies at high risk for RSV. It does not prevent RSV, but it helps to lower the chances of getting it. This vaccine is EXPENSIVE! I'm talking $1600 a pop. Luckily for insurance we pay $50. He will have to get this again next month and then will be done until RSV season comes around again. I'm thankful that this is the only reason we will be seeing the pulmonologist. We can cross that one off our list next month!

Carter didn't want baby bubba to be scared so he

thought he would keep him company!

First Time Blogger

After Camden's diagnosis of Down Syndrome I began frantically searching the Internet for anything and everything about DS. Even though I am a pediatric nurse, I will be the first to admit I only knew the basics and that wasn't a lot. What I found at first (medical conditions, developmental delays, cognitive impairments, etc) only added to my despair. I then started to read blogs, A LOT of blogs, and soon became comforted and at ease with my new reality. I kept thinking I would try the whole blogging thing out but then soon put it out of my mind. I'm not a writer. In fact, I'm probably borderline terrible at it! After 2 months of being on this journey I decided to try the whole blogging thing out mainly because its therapeutic to me, but also to share our lives with friends and family. I also hope that I can help others out who face a diagnosis of Down Syndrome just as other bloggers have helped me!