Letter Thirteen

April 18th, 2007

Mom, 

Thank you for being here for me today. Everyone has finally left Noel’s hospital room and now it’s actually quite. It has been a whirl wind of a day. Today was the hardest day of my life so far. Having your little baby go into surgery is so stressful. I know that having the g-tube is going to be best for Noel so that she can finally get all the nutrition she needs. It’s been a hard choice to make, but seeing her sleeping soundly and getting feed without her having to do so much work gives me a lot of peace. I’m hoping that now we won’t have to have out life consumed with feeding difficulties. 

I am worried though about the muscle biopsy, the doctor did today. They said they normally wouldn’t do it on Noel since she is so young, but since they were doing surgery anyway they might as well get this done while she was under anesthesia. They haven’t told me what the results of her muscle biopsy could be. They said it’s because there are too many possible diagnoses that they don’t want me to get overwhelmed. They also said parents tend to go research the worst possible condition and that would  just create fear and cause me to be overwhelmed. 

On one hand it would be nice to have a diagnosis so we finally know what the heck is going on. But I also don’t want to give up the hope that nothing is really wrong and she’s going to grow out of all of this. It’s such a challenging position to be in; to want to know what is going on, but to also be sacred of the possible diagnoses. I know we can get through anything, I know I am strong and so is Noel. 

Well I’m gonna crawl into my little sofa bed under the window in Noel’s room and try to get some sleep before the night nurse comes in to check Noel’s vitals. I love you mom so much. I will see you in a few days when Noel get’s discharged. 

Love, 

Tina 

Letter Twelve

April 16th, 2007

Susan, 

Thank you for finally listening to me. I have been telling everyone in the Emergency Department that they can’t send Noel home. She is not ok and  needs help. I need help too. I’ve been trying to do this alone and I just can’t anymore. You are the first person who actually listened to me.

If it weren’t for you I would be sitting at home in a ball of tears instead of in this hospital room with one of the pediatric nutritionist. This journey of Noel trying to gain weight has been exhausting. I am still trying to feed every 3 hours, then pumping and trying a bottle of formula all to no avail. The only reason I’m even in town is because I came home to see my family. 

The first two days Noel was doing great, but the last two days she’s been so lethargic and tired. She has even less muscle tone than normal. I brought her here to Children’s knowing you guys would know how to help her. But when they were about to tell me she was just dehydrated and she could go home and be ok, that’s when I about lost it. 

She is not ok! She hasn’t been ok since the day she was born. Of course I’ve been trying to pretend that everything is going to be ok with her and we’ve all just been overreacting. But now I’ve come to the realization that something is really wrong and she needs help! 

I know nothing more about whats wrong with her than when I took her home from the NICU months ago.  Thank the Lord the ER nurse went and found you after my emotional plea about how I couldn’t try feeding her anymore on my own and that I needed help. 

I guess that’s your job though as the Charge Nurse to handle the situations that are out of control. Well things would have been even more out of control if I would have had to leave today with Noel and go home to continue to do this alone.

 I know the nurses mean well, but sometimes it’s hard to not feel like they are just trying to get through their patients and not truly listening to the parents. 

Help is what I came for and now I’m hopeful that that is what I’m going to get. 

Tina 

Letter Eleven

April 13th, 2007

Patricia, 

I wanted to write you a letter of appreciation. You probably don’t even realize it but you have really made an impact on me. Thank you for not making me feel like a bad mom. Noel’s weight is down again this week and yesterday when I called her weight into the Pediatrician’s Office the nurse made me feel horrible: “She weighed what? That’s only point seven of an ounce more than last week, are you sure you’re feeding her every three hours?” 

Well actually I am doing exactly what the doctor told me. I am nursing her every 2-3 hours, pumping and giving her a bottle of breast milk with extra formula after. 

I feel so emotionally and physically drained. I feel like my life revolves around feeding Noel or thinking about feeding her. I am obsessed with the scale and weigh her all the time. I already knew that her weight gain was only point seven of an ounce before the nurse told me. I’ve been stressed about it all day. 

Thank you for just listening to me. I feel like everyone is telling me what I need to be doing but no one is actually listing to me. I didn’t tell the nurse on the phone this, but I think the Doctor took her feeding tube out to early? I know he thought it was the right thing to do and that she was going to gain weight on her own but now I’m worried. I have tried everything I could think of to help Noel gain weight and it’s just not happening. 

Patrica I’m doing the best I can. I feel like it’s my fault she’s not gaining weight so I don’t need a rude nurse making me feel worse about it.  I’m going to take her back to the doctor after my trip to my parents. Maybe the doctor will have something else to try. 

I appreciate the fact that you see me every other week to check Noel’s weight and you know I’m doing everything the doctor is telling me to do. You know how hard I’m trying. Thank you for being at least one person who is encouraging me. 

Thanks,

Tina 

Letter Ten

December 8th, 2006

Dear Juliana,

You just left and I’m still crying. That poem you gave me, “Welcome to Holland;” has unleashed a flood gate of tears I was keeping in. The words of that are so powerful and what is most powerful to me is that I’m not alone in this, not alone in these feeling I’m going through. Reading this poem written by someone else means someone else has felt this exact thing that I do.

I thought I was going to Italy just like everyone else. I had her room all ready, had all the outfits hung in the closet had my diaper bag ready with me at the hospital. I learned how to speak Italian. But when we landed or when I delivered her we were in Holland and not Italy. And like the poem says in Holland you’ll have to get new guide books and learn a whole new language. But also like it says you’ll meet people you would have never met.

You’re one of those people, a public health nurse by day and an angel by night. I wouldn’t have meet you if I wasn’t in Holland. The morning you walked in to my house I really needed someone to talk to, someone to encourage me and tell me I could keep going. When anyone asks how I’m doing I tell them the easiest answer possible, fine. I’m not fine though. This is so hard.

My whole pregnancy I would watch TLC’s “Bringing Home Baby,” a reality show following a Woman’s pregnancy and delivery. In all the episodes I watched, I never remember a family bringing home a baby that wasn’t healthy. Now that I’ve been home by myself for a week I’ve been watching episodes just to see if anyone did in fact bring home a baby who wasn’t healthy. I wanted to see how they dealt with it, if their baby got better. I wanted to be understood, because no matter how many people have told me their here for me and they understand they don’t.

They have no idea that I feel completely and utterly alone. They don’t know that I cry myself to sleep at night. During the day I beg God in prayer for Noel to snap out of it and be ok. So when you brought me this poem it gave me hope, that I may not have met anyone yet who understands, but at least those people are out there, somewhere.

Your sweet spirit and happy heart also helped to set me at ease. My mom is in Denver and hasn’t been able to visit yet so I very much needed your maternal support. I know I’ll see you next week when you come to check Noel’s weight. Thank you again for being such a bright spot in my dark day.

Tina 

Letter Nine

November 30, 2006 

To the NICU Mom in the room next to me,

I’ve been trying to not intrude on your privacy. We all feel like we’re in a fish bowl here. But I can see you in your room and I see your tiny little baby. How did we get hear? This is not what the picture of having a baby is suppose to look like. I guess that picture is gone now.

This place is so scary. I’m always afraid of the news about Noel, every time the doctor comes in I’m assuming she’s bringing bad news. I can’t believe l’ve met other families who have been here for months. How can that be? Every day I wake up wondering when are we going home? 

I feel angry sometimes that we’re here. I feel like I can’t do anything for my baby. I can’t wait until I can just be alone with my daughter. I appreciate all the nurses and doctors who are caring for her, but I just want to go home.

I’m sure you’re asking the same thing. I wonder how long you have been here and what’s going on with your baby. I’m sure it would be rude for me to ask you, so I don’t. But I just feel so lonely and wonder if we could be friends. Friends in this terrible situation we’re in. 

But truth is how can we have a friendship when we can’t leave our babies sides? I mean sure we may pass each other in the hall or sit near each other in the cafeteria, but we’re too full of guilt about being away from our babies to make eye contact. We hardly have any energy to talk; we’ve had to tell the same story of our pregnancy, labor, and delivery a thousands times. 

We’re both probably too full of our own emotions anyway to even be there for each-other. I feel like my emotions are on overdrive, their running wild. This is my first baby so I assume some of this is normal with all the hormones. But the other racing emotions can’t be normal? Every time an alarm starts beeping my heart rate sky rockets. It’s usually just a signal not picking up, but still you never know.

Are you feeling the same way I’m feeling? Like you want someone to help you but you just don’t know what to say? I mean how can anyone help us when I feel like I can’t even help myself. 

Are you overcome by the what if questions? These thoughts are constantly running through my mind: What if she doesn’t make it? What if we have to stay here for months? What if it’s my fault that she’s here? What if she has a permanent condition? 

What are your what if’s questions? I’m sure if I heard yours I could tell you how it’s all going to be ok. That you need to take it one day at a time. Don’t think so much about tomorrow, just get through today. Funny I guess I should listen to my own advice.

Well friend, we’ll probably never actually talk so I’ll just leave you this letter. I just wanted you to know that I see you. I see how hard this is. You’re not alone even though at times you feel like you are. I hope you get to go home soon with your sweet little baby. 

Tina 

Letter Eight

December 4th, 2006

Dear Jana,

I wanted to write you and tell you thank you so much for letting us stay last night. I knew the first night out of the hospital would be tough, but I had no idea it would be that bad. The pressure of taking care of Noel without doctors and nurses is terrifying.

Also I can’t believe they make a laying down car seat! Have you ever heard of that? I guess it’s a life saver though because we wouldn’t have been able to leave the hospital without it. Noel couldn’t maintain her oxygen level sitting up right in a normal car seat.

Last night was the first time I had to make her tube feeding alone, the doctors said they think she’ll get the nose feeding tube out soon which is good because I don’t want to have to do this forever. Even though she’s on a feeding tube I’m still trying to nurse. And what she can’t eat I pump and put it in her tube. I want to do the very best I can for her and the doctors said that will help.

Between the feeding pump and the oxygen I’m always worried I’m going to pull a tube out of her. Thank goodness I could monitor her oxygen though; otherwise I think I might have had an anxiety attack. I’m so glad Noel did amazing and slept great. For the amount of sleep I got, I slept great too.

The clean comfy bed felt divine in comparison to the small hospital chair I’ve been sleeping in. I can’t believe Noel was flight for life-ed here two weeks ago. I’m so glad that pilot let me get on that airplane with Noel, I don’t know what I would have done if I had to drive four hours through the mountains to Denver while she was in an airplane. I still remember getting off the plane, walking into the hospital and around the corner to the waiting room. I was enveloped with love and the familiar faces of my family. The hug you gave me was the best ever.

Also thank you for letting us stay here last week, it was my first time out of a hospital in eight days. I couldn’t wait to take a shower when we go to your house. So thanks for letting me borrow shampoo and p.j’s. I still can’t believe the nerve of someone to steal bags out of the back of a pickup truck parked in the Children’s Hospital parking garage. Some people.

Jana your kindness in hosting Thanksgiving at your house so we could all be together and so that I could take a little break out of the hospital meant so much to me. I don’t know if I even said thank you because being away from Noel made me feel in a daze. But thank you. Seriously, the love of the Lord and the love of family has been getting me through this. I appreciate all that you and Seth have done for us.

Going home without knowing what was going on with Noel other than she has low muscle tone is hard but I know that God is in control and He has bigger plans than I can’t even understand. Thanks sister, it’s meant so much to me. Now I just need to figure out how I’m going to do all of this. I never thought that this would be the picture of bringing my baby home. 

Love, 

Tina

Letter Seven

November 26th, 2006

To the person who stole all of my things:

I guess you had no idea when you walked up to the back of our truck and took all of our things from the hospital parking garage that we were inside devastated by the fact that our daughter is very sick. Maybe in time I’ll come to forgive you but right now I’m just so mad. I finally left the hospital and showed up at my brothers house in order to take a shower, refresh, and use the breast pump to pump some milk for my daughter.

When we pulled up And looked in the back of our truck and realized everything was gone it was like a punch in the stomach. Only thing is, I already feel like I’ve been punched so it was a though I was laying down and you came up and punched me again. I don’t know, maybe you need the camera that has the pictures of my daughters birth.

Maybe you need some new outfits that a post natal mom should be lounging in. Maybe you’re going to pawn off the breast pump to get a few bucks to buy yourself some thing. I don’t know why you did it you must be in a worse place in your life then even I am in.

But I just wanted to let you know your actions were incredibly selfish and thoughtless. Now I’m sitting here in my brothers house away from my newborn baby who is laying in a hospital bed. I have no clean clothes, I don’t have shampoo, you’ve stolen her baby book so I can’t even work on that.

I feel like I’m about to explode because I really need to be able to pump milk to give it to her through her feeding tube. I know we will never meet and I know I’ll never get my stuff back; but I’m writing you to somehow help me feel seen, heard, and validated. I hope for your sake you’ll think about your actions someday, somehow you’ll have remorse and you’ll change your life. Taking things away from others is no way of living a life.

Tina