A bad day

"Don't take what you have for granted, it could be much worse."

"Saying someone shouldn't be sad because others have it worse, is like saying you can't be happy because someone else is happier."

I have been struggling with both these quotes as of late. Some days I feel one, while most days I feel both. When I take Scarlette to get her blood drawn, I see all kinds of children and parents. Some of which have it way better, and some of which have it much worse. I've come across children with a broken wrist and think, why can't that be all I'm here for. Then I see children forever strapped to a wheelchair, never going to talk, always having to have treatments done, and I thank God for the simplicity of Scarlette's problems. 

But not today. Today I feel unhappiness and anger. I feel sadness. 

I am constantly bombarded with pictures on Facebook of babies and their parents, happy and giggling, healthy and active. I see their smiling faces, the joy in their posts, the perfect little faces. And all I can think is why can't that be me. Why can't I have the pleasure of waking up in the morning and have my only worry be that my child has kept me up all night, he won't nap, she won't eat all her food. Why can't we have it a little easier. 

When we had Kayden and he was in the hospital for 10 days, I thought that was my trial. I thought that was my time of suffering and my time to grieve for a normal life. He came home and he was perfect. And I was that mother, the one that posted so many happy pictures of their children. But this time it's different. This time we are going through true suffering. 

I took my baby girl to physical therapy this morning and it was a very trying day. We have had to limit her therapy to only once a week because at a $40 co-pay, we are unable to make it financially through the week if we go more than once. And to have to make the decision to either, receive therapy for your hurting child, or put food on the table for the rest of the family, is not one I would ever want anyone to go through. So this morning we had our one day of therapy for the week. And this morning, I almost lost it in front of the whole staff. 

Physical therapy for our little girl is not an easy thing to sit through. She is in constant pain and to have to sit by her and pretend that it doesn't tear my heart apart. I willingly let a stranger take my child and put her through pain, to the point that she is sobbing and unable to slow her breathing until I pick her up. She is so uncomfortable and I am unable to do anything to make it easier on her. But I have to push through, I have to make sure she gets the exercises she needs so she will be able to use her arm in the future, but it does not make the present any easier. 

And what makes it worse, is going on the internet and seeing everyone else's pictures. How they spend their days. Going to the lake, the park, the beach. Going to a fun place with their babies. Laughing and smiling and making memories. And so far, most of the memories I have made with my poor little girl have been ones that I would rather not relive. Our memories are of heartache. Pain. And hospital visits. 

She has developed a new growth on her underarm, one that has doubled and doubled and doubled since we saw it the first time. She has had an ultrasound on it, they believe its a cyst. But we are still waiting to see where to go from here. It hurts her constantly. She is uncomfortable and it has now grown out to her back and is the size of a golf ball in one area. And this morning she developed a rash around her mouth, not sure why or where it came from, but there it is all the same. As if she needs another thing on her body. As if we need another thing to worry about. 

Tomorrow while other parents are taking their kids to the pool, watching a movie, playing with blocks, we are meeting with a plastic surgeon to see how many surgeries our 3 month old is going to have to endure. As if the two she has already had aren't enough. 

Instead of my husband surprising me by taking a half day at work so we can go do something fun and exciting, he is taking a half day off so we can once again go to the hospital we have become all too familiar with. 

Yesterday I received a present from my grandmother, some cute clothes for both kids. And I picked up the little dress that was meant for Scarlette and touched around the garment, looking at the details. My sister looked at me and asked if I did that to every outfit I see of hers. I asked what she meant, and she noticed that when I picked it up, I opened up the sleeve subconsciously, evaluating whether it would fit her entire arm in it. I didn't notice that I did that. I didn't notice that every time I see clothes for my little girl, I think about how they won't fit. I think about how she isn't a "normal" size. I think about how we will have to take it to Matt's mom, so she can fix it, so Scarlette can actually wear clothes. And all I could think was how much easier it could be. How nice it would be to go to a store, receive a gift, or get hand-me-downs and be able to put her in the outfit that day. 

There are so many things we can't do. So many limitations. So many conditions and rules. 

Because of her condition, we are unable to be around anyone that is sick, anyone that has come in contact with anyone sick, or anything that might have too many germs. 

Because of her condition, we can't have anyone babysit her because they haven't had training on a broviac line. They don't know how to help her if she is in too much pain. They don't know the procedures or the symptoms to look for if something has gone wrong with her immune system. 

Because of her condition, we can't take our son to the park, the church, a friends house, in fear that he will get sick and in turn put Scarlette's health in jeopardy.

Because of her condition, we can't have a much needed date night, because we don't have anyone that can care for her like we have to. No one knows how to do a Heparin flush, give her medication, or the tricks to make her eat even when she's in pain. 

Because of her condition, I am jailed in our house, only allowed to leave to go to the hospital. I have quit my mothers group at church because I can't come in contact with too many people who could expose me to a virus. I am stir crazy, only talking to people under the age of 2, the conversations of which usually only include the words no, hungry, no, nap, no, and eat please. 

Because of her condition, we are constantly in fear. Every blemish, every small fever, every cough, calls for fear of something else. Something else that may be wrong. Something else that we might have to rush her to the hospital for. 

And yes, I know I am in a horrible mood. I know I am just having a bad day. But today, I know it could be worse. It could be a lot worse.

But all I can think, is it could be SO much better. 

from the womb to the nicu

The moments between trying to catch my breath and hearing her take her first breath felt like an eternity. I tried to stay quiet, closing my eyes to help concentration, and listened. And I listened and listened and listened. My body ached and my heart pounded. And still, all I could hear were the doctors talking, the nurses rushing around, the stitches being applied to my body, and everyone telling me I did a great job. But that was not what I wanted to hear. All I wanted ringing in my ears was the sound of her voice. And still, I didn’t hear her. So I prayed, I begged, I pleaded.

Please, please, please…

It would be an understatement for me to say that my pregnancies have been hard. They were nothing short of miserable, every step of the way. With my son, I was bloated beyond belief, went into the hospital 2 months early and had to stay there, bed ridden, for 2 weeks. I went through having him 6 and a half weeks early, having him stay in the NICU for 10 days, and stitches in a place I never EVER wanted them. But everything I experienced with him is nothing in comparison to the hell we've been through with our daughter. 

Because of my previous pregnancy, they wanted to start me on a medication called Progesterone. It is used to calm the muscles in the womb in hopes that an early delivery will be avoided. This is a really thick oil that they inject into your hip with a very thick needle. It feels like you're being stabbed, punched, and burned at the same time. I asked why it hurt so bad compared to every other shot I've had. They told me because the oil is so thick, your body does not want to accept it into the muscle, so it fights it the entire way. It hurts from your puncture spot all the way to your toes. And burns for days. And right when you start to feel better, it no longer feels like the worst bruise you've ever had, they give you another one. Once a week from 16 weeks until 37. You start to "get used to it" and by that I mean, you come to terms with the fact that the walk from the doctors office to he car is going to hurt. You come to terms with the fact that the nurses HATE giving this medication because of the look of pain on my face. How they say I'm so sorry every time they jab it into my side. Little did I know, the medication I suffered through for so many weeks, did not stop the inevitable. 

I left my job at 3 months because I worked with dogs. Dogs of all sizes from chihuahua to great dane. And cleaned up after them, used harsh chemicals, and occasionally had to break up fights. Because of all these factors, my doctor and I agreed it would be best if I stayed home and took maternity leave early. This turned out to be such a blessing because not only did I start that dreaded medication, but because of all the complications I would have to face in the future. 

But that was not the only perk of being able to stay home. What meant the most to me about that time was being able to have the last bit of one on one time with my son. I got to spend every day getting him up, hugging on him, and taking care of just him for a couple months. That is, until I started having contractions.

With my son, I went into the hospital on a Monday. They gave me a shot that stopped the contractions, and sent me on my way. Three days later, on Thursday, I went back and was checked into the hospital because I was dilated 2cm. With my daughter, the EXACT same thing happened. And I am not saying just the day, I mean I went into the hospital with my son at 31.5 weeks, and I did the same thing with my daughter. I went back 3 days later (also a Thursday) and got checked in because once again I was dilated 2cm. With my daughter I was put on bedrest after the first visit. I couldn't do ANYTHING for myself anymore. No getting up, no picking up my son, no getting him or myself food, nothing. I had to lay on the couch all day long and just "relax". I was lucky enough to have my father be able to come take care of myself and my son, though it was for only 3 days until I went back. And once I got checked back into the hospital, they started the magnesium. 

The drug magnesium is a terrible thing to experience. And through both pregnancies, I was on it for a total of 8 days. First, you can't eat. Nothing. They put you on an IV drip, and that's the best they can do. You're allowed 1 ounce of liquid every 2 hours. If you can't picture what an ounce is, try taking a long pull from a straw, then stop. That's it. For 2 hours. Not only that, but the drug makes you feel like you can't control your body. You sweat more than you ever have before. I would have 4 ice packs on me at all times and because of the heat I was feeling, they melted almost immediately. I lost my modesty and would practically be laying naked for every doctor to see. Your eyes can't focus because it's a muscle relaxant. I remember always having one eye closed so I could focus on people when they talked to me. You are hooked up to a catheter and have to wear "airbags" on your feet so you don't get blood clots. One of the first nights they put me on the highest legal dosage of the medication. In the middle of the night I was trying to turn myself over onto my other side, and I couldn't. I couldn't pull myself over because you lose all strength in your muscles. I was whimpering and crying and trying so hard to just turn over. I remember waking my husband and having him worried and ask me what's wrong. I just said that all I wanted to do was turn over, and the look on his face, the sincerity in his voice when we said how sorry he was and helped me over, made me realize how miserable I must have looked. 

I remember with my daughter, my husband and I talked about what we would do if I was checked into the hospital for an extended stay again. He would go back to work while I was there, and leave if anything was happening, or if the baby was coming. So the morning after I was put on magnesium, my husband left at 4am to get to work on time. I barely remember him leaving, but at 6am, I remember feeling like I was literally dying. The only thing I could think to do was call him. All I wanted was him by my side. That seemed to be the only thing to make it better. And one of the greatest moments of our relationship is when he picked up that call. He asked if I was okay and I told him no, but I couldn't explain why. I just felt like I was going to die. He asked me if I wanted him to come back and without hesitation, I told him yes. That I needed him. That I couldn't do this alone. And without hesitation, he told me he would be right there. And it was times like this where I knew that we fully understood each other. That he knew I wasn't being dramatic. And I knew he would do anything for me. 

The 2 weeks passed by in complete misery. Once I was off the magnesium, I could finally eat again, and Matt went back to work. I sat in the hospital all day long, all alone, without my husband, without my son, without anyone but the nurses who always wanted to poke and prod. I missed my son. I missed my clothes. I missed my bed. I missed everything I couldn't have. 

They sent me home on Thanksgiving, telling me once again I was on bed rest, once again my dad was practically living with me, once again I couldn't take care of my son. And this time it only lasted a week, because at 6am, contractions were strong again. I went back into the hospital at 7am, was dilated, and they kept me once again. Less than 24 hours later, my daughter was born. And I wish it was that easy. And I wish I could say I went home two days later with my baby girl in tow. But things are not that easy. Not for us at least. 

They hooked me up the the monitors. Two on my belly, one for contractions, one for her heartbeat. Now, they were seeing problems with her heart when I was a resident there for 2 weeks, but nothing ever came of it. Her heart would slow, it would be a consistent rate for too long. When a baby is in the womb, the heart rate is supposed to raise and lower, showing that she is active and moving around. Hers would not do that. So after a couple hours of being in bed, epidural already in place just in case, water broken by the doctors, and suffering through contractions, the doctors, nurses, and all the NICU staff came rushing in. "We need to start pushing now." 

Her heart rate was not acting correctly and the doctors wanted her out immediately. The room wasn't even set up. I was pushing on the bed and it wasn't even folded down yet. The nurses were taking turns getting things ready and helping me hold my legs. I was put on oxygen and told we needed to get her out. Little did we know, she would not be coming easily. 

I pushed and pushed and pushed. The doctor could not understand why she kept getting stuck. I tried and tried so hard. We would count to 10, give me a small breath, then go again 2 more times. Then I could have a small break, lay on my side, and rest. Three sets of 10. Sounded like a workout routine. I was focusing on my breathing and trying not to pass out. They kept telling me they could see her hair, her head, her eyes. I couldn't understand why she wasn't out then. How could you see half her face, but she was still so stuck? And when I was getting ready to do another round of pushing, my husband looked me in the eyes and said, "She needs to come out, now." I could hear the urgency in his voice. I could hear his seriousness. I knew that if I did not get her out then, we would lose her. She was getting stuck in all the wrong places, and she would not have made it through, had I not pushed her out right then. I did my 3 sets of 10. I was going to lay back and take my breaths, but the doctor said no. She said I needed to continue. And again, the look on my husbands face. We knew. We knew it needed to happen. I cried out and said I was going to pass out. I felt so dizzy and lightheaded. My husband told me she was going to cut me all the way open. The nurses were standing over me pushing on my stomach trying to help her out. I hurt. I hurt so much with everything, but I couldn't feel it yet. I was numb. I thought I was going to lose her. 

Finally she was pulled from me. My husband didn't even get to cut the cord. There was silence. And then there was so much talking. So much rushing. So much noise that was not my baby. The moments between trying to catch my breath and hearing her take her first breath felt like an eternity. I tried to stay quiet, closing my eyes to help concentration, and listened. And I listened and listened and listened. My body ached and my heart pounded. And still, all I could hear were the doctors talking, the nurses rushing around, the stitches being applied to my body, and everyone telling me I did a great job. But that was not what I wanted to hear. All I wanted ringing in my ears was the sound of her voice. And still, I didn’t hear her. So I prayed, I begged, I pleaded.

Please, please, please…

A cry. A small little whimper. And hesitation to continue. Three minutes. It took her three minutes to start breathing once they yanked her from me. My husband went over to see her while I was being completely stitched back together. Something was wrong. I knew it. But I didn't know what. 

For all the moms that were able to hold their baby, snuggle, take pictures. Be thankful. Be grateful that you were able to spend those first minutes together as a family. 

For all the moms who weren't able to give their babies a hug, no family first pictures, no snuggle time. I know what you went through. After getting her to have a steady breath, they held her over me for 2 seconds, let me give her a kiss and tell her I loved her, and then she was gone. And I was told to rest. 

My husband went with her so he knew where she was going, what was going on. The doctor told me she had slight swelling and they were going to take her to the NICU to figure out what was wrong. My husband came back and I asked to see pictures he took of her. His response was, "are you sure?" That is not what I was expecting. Of course I'm sure. She's my baby. I want nothing more than to see her little face. And then I saw. And then I understood. 

All night I had constant nightmares. I would wake dripping wet, grasping for my stomach, thinking it had all been a horrible dream. But it was empty. She was gone from me and I did not know what would lie ahead. My doctor came in and told me they would be transporting her to CHOC in Orange. She said it's not protocol, but if I wanted to leave with her, she would discharge me early. Less than 18 hours after her birth, we were in the NICU watching the emergency transport team take my baby girl in an incubator to her new home. We told them we would be following them there, leaving one hospital to go live at another. We watched her go, got in our car, and set out on our new journey. Not knowing what would happen, where we would go from here. It was the longest drive. I felt so sick. In so much pain. And the most heartache I have ever experienced. 

The road led us to her hospital. To the hospital I've passed before, thinking how sad it is that there even needs to be a hospital designed specifically for children. How sad it must be inside. So many sick children. So many dying kids. So much pain. And now, here we were. One of the parents that stalk the halls. One of the parents that give that, "I'm so sorry," smile as you pass. We were there. This was our life. This is what we would be. 

Love,

Simone