1 lb. 8 oz. - Very Scary!

NICU Day #1 of 127 days
September 30th, 2001

At 2:34 pm I was pulled from my mommy’s warm cocoon into a cold sterile space unlike anything I could have ever imagined. I wanted to stay inside longer… but I knew I couldn’t because I could feel myself getting sicker. My heart had been thudding loudly in my chest and I was getting weaker. Mommy was sick too and her body just couldn’t provide me enough nutrition. It was time for me to leave the only home I had ever known.

I don’t remember much about those first few moments - I wasn’t able to breathe until I felt a tube going down my throat. I really wanted to cry, but the tube was too big. I remember just being so scared. Where is mommy? Where is daddy?

When I woke up later, I couldn’t see anything because I had patches on my eyes to protect me from the burning lights above. I felt needles going into my arms, umbilical cord, and leg, there was a stinging feeling everywhere that I was poked. The tube was still in my throat and there were odd rumbling noises around me, alarms, loud voices and lots of people. I was afraid. “Where am I? What is going on?”

Then I heard the whispers… mommy and daddy will be coming to see me soon! The nurses and doctors were just trying to “stabilize” me. I hoped it wouldn’t take too long. I wanted to be with my mommy and daddy. I know they loved me they had told me over and over when I was still inside.

Then came the silence, someone was coming my way… a nurse’s voice said, “She is stable right now.” I couldn’t see anything, but I sensed their presence. “Hello Mommy & Daddy!” I yelled but knew they couldn’t hear me because of the awful breathing tube. And then I heard the beautiful music of my daddy’s voice. He was right next to me! I wanted the blinders taken off so I could look into my wonderful daddy’s face. He had entertained me with stories and silly songs for so many months. He was asking a question – I was so distracted by the purity of his voice that I didn’t hear the question. And then my mommy… my gentle, loving mommy asked, and I heard this very, very, clearly “Can I touch her?” The nurse answered “not now.” I could hear her quiet tears because I too was crying deep in my heart. The only thing I wanted in this world was to be held and comforted by my mommy. I heard the soft voice of my Aunt Maureen as she murmured something and then the peaceful, and yet strong voice of Fr. John Whitney as he led them in the Lord’s Prayer. They prayed for strength while I lay on a flat table under the sterile lights. Strength for them. Strength for me. “I love you mommy and daddy, I’m fighting to stay with you.”

Where am I? Mommy.... Daddy.....

NICU Day #2 of 127

October 1, 2001

So much going on around me. So many voices, I've never heard so many people talking at once. Where are mommy and daddy? I can hear their voices. Did they just leave me here in this cold awful place?

I still can’t see anything because of the eye patches, but at least I’m beginning to feel warm again. Not warm like in mommy’s tummy, but my skin is warm again. This awful tube is still in my throat, it goes deep inside me. I feel air whooshing in and then out again. So many wires and tubes are strapped to me! I can’t even move because they are so heavy, the ones on my belly are sticky. On my foot there is a scratchy material thing with a light inside, and my other arm is strapped to a board with a needle inserted into me. I can’t even suck my thumb. These people keep poking me. OUCH! They are taking my blood – why? What for? Leave me alone…. Please leave me alone!

My new home is a huge plastic box. I’ve only had a glimpse when the nurse moved me around. It’s weird in here. Sounds are muffled, I feel like I’m inside again, but the box has two round circles that open and when that happens the noise is deafening!

People keep bugging me. They open the portholes to change a wire or move me around. Oh no… this time they are opening the box from the top! What’s going on here? I feel the nurse moving me again, she is pulling me into the cold space. She is laying me on a freezing scale, my wires are pulling on my skin, it feels like they are going to rip me apart. Okay, now she’s putting me back into my box. She’s putting new pads around my bottom and moving wires and stuff around. Finally she closed the box. I’m cold. I hate being cold! Where are mommy and daddy?

Later I wake and hear daddy’s voice. He’s talking to someone. I think he’s talking to the nurse about me. Daddy asks when he can hold me, but the nurse says it’s too soon to know. She says the next few days are critical for me. I want to scream, “Daddy, please hold me NOW! Where is mommy? Please don’t leave me. They are hurting me.”

I can’t see daddy, but I know he’s there. Just outside my box. I know he loves me and wants me to be brave. We pray together that God will heal my body and that daddy and I can be together soon. It makes me so sad. I begin to cry, but no one can hear me because the tube stops the sound. I’m wailing now, but only I can hear it. My chest is heaving up and down it is getting harder to breathe. Okay, I need to calm down. Daddy is near. He sits quietly beside my box. I hope he is daydreaming about what fun we will have together. IF we have a life together.

I wake up to a wonderful dream. Mommy is here! I can sense her and smell her just like I did when I was in her tummy. Someone is opening the portholes, I’m hoping, hoping, hoping… yes! It is mommy. The nurse is telling her how to touch me! Mommy cuddles the top of my head with her palm. I feel her fingers around the top of me and then her other hand other cups my bottom. They tell her not to move her hands. She cannot stroke my skin because it overloads my nervous system. I love my mommy touching me! I feel so much better now. I can hardly feel the pain. My mommy is here and she loves me. I know she is saying prayers too. Prayers that one day we can go home together. I want that too. More than anything I just want to be with my mommy and daddy. Stay here with me mommy. Stay here daddy. Promise you’ll stay.

Bye Bye Tube

NICU Day #3 of 127 days

OUUUCCCCCCHHHHH!!!!!!
It feels like a freight train is coming up through my throat. PLEASE stop this pain. It’s too much! And then... it’s gone. Wait a second… the tube is gone, the tube is gone!!!! It hurts – feels pretty raw – but at least the tube is gone!

I can’t wait for mommy and daddy to see me. They will be very happy to see my mouth and cheeks. Here they are! I feel mommy and daddy’s presence, just outside my box. They are so happy. The doctor is talking to them. He says I’m doing really well breathing on my own. Just a little bit of oxygen through nasal prongs. Hey, that’s what this is. It feels kind of poky, but so much better than the tube in my throat.

Daddy asks if he can hold me. The doctor says no. Not today. If I could just hold my mommy and daddy for one minute I’d be so happy. “Please God… doctors, nurses? Please let me hold my mommy and daddy. I need them!”

Seeing Is Believing!

NICU Day #4 of 127

At last the patches are off of my eyes! The ceiling lights are agonizingly bright, but at least the lights on the top of my box are gone. I heard a nurse say that I’m no longer jaundice. Now I can really take a look around me.

TODAY IS THE DAY!!!!! I will see mommy and daddy for the very first time! I wonder if my eyes look like daddy’s or mommy’s? I have waited a long time to see them. I know they laugh. I’ll bet they have beautiful smiles. I can’t wait to see my mommy and daddy!

Here they are! My wonderful mommy and daddy! I have longed to see them. They are just like I pictured in my mind. Mommy has the most beautiful blue eyes. They are sparkling – oh no – those are tears sliding down her face. She never saw my eyes before today - we’ve never looked into each other’s eyes. I see so much love there. Now it’s daddy’s turn, he is looking at me and I’m looking right back at him! WOW – this is so great. I see him, I see him! “Mommy and daddy, I love you! Seeing is Believing. It’s you, it’s really you!”

Loving You

NICU Day #5 of 127

Mommy was with me all day today. She sat close to my box and whenever the nurses allowed it, she would put her hands in and cup my head and bottom. She has such nice strong hands. She told me that daddy had to go back to work today, so it was just “us girls.” The hospital had found a room for her, so mommy and daddy can stay at the hospital with me all the time.

I’m sleeping a lot, I guess I always did. But now I know mommy and daddy are near me all the time so I don’t need to worry about them leaving. They will always be here for me. Even if they can’t be sitting next to my box, I am always in their hearts. Love is so good. I can’t see it, or touch it, but it is all around me.

Holding You!

NICU Day #6 of 127

Daddy is VERY excited. I’m not sure what they are saying… but it sounds like...I can hold my mommy today!! Daddy is going to tell her right now. Mommy is still healing and needs breaks to lie down. Daddy sweet talked one of the nurses into holding time. I know I have the best daddy ever, he makes things happen! The nurse told him that he can hold me first, but daddy says mommy needs to hold me more. He is so excited. He leans over and opens the porthole and whispers, “I’m going to get your mommy right now so she can hold you!”

Here is my mommy! Daddy keeps telling her, “Yes, yes, it’s true. The nurse said it would be okay!” I’m looking at mommy and she’s looking at me. I don’t think either of us can believe that this moment has finally arrived. The nurse settles mommy into a chair and talks about “kangaroo care.” Mommy will hold me skin to skin so she can keep me warm. Her body temperature will keep us both warm!

Here we go – the nurse opens up my box, detangles my wires, gently picks me up and brings me to my mommy. FINALLY!!!! We are holding each other. My mommy feels so good. I can feel her breathing in and out. I can hear her heart beat. Her heart! I remember the sound, it kept me company when I was inside and dreaming about this day.

Much too quickly it was over. Mommy reluctantly gave me back to the nurse. Daddy’s turn would be next, probably tomorrow. “I can’t wait to hold you daddy! It’s our special time. Just you and me!!!!”

1 lb. and 10 oz.

NICU Day #7 of 127

Today I am a week old! 1 pound and 10 ounces. It’s still pretty scary around here. The doctors have so many tests for me every day. They’ve told mommy and daddy that I’m about 70% viable – whatever that means. Mommy cries and daddy comforts her.

The three holes in my heart will hopefully close in time, but if not, I will have to have heart surgery. I have an extra rib and an odd vertebrae. They are checking to see if I have chromosome and kidney abnormalities. The results won’t be here for weeks. Next I will have brain and heart ultrasounds. Mommy and daddy pray that the tests will be normal. Daddy laughs, “normal is so underrated!”

Meeting Poppa and Grandma

NICU Day #12 Of 127

Mommy and daddy are thrilled! The doctors say that my heart and brain look good.

Today I will meet my Grandma and Poppa for the first time. Auntie Mo has been here nearly every day, but she can’t hold me. Those are the rules. Grandma gets to hold me. I think she is as nervous as I am...here we go! “Don’t drop me Grandma!” (sigh) She is a good holder. She’s warm and soft. Poppa doesn’t want to hold me yet. He says I’m too small. They have both been so scared, afraid for me and my mommy. Grandma tells me that she is mommy’s mommy. She held mommy when she was a tiny baby too. She tells me that I have a huge number of people praying for me. I love my grandma. I can’t wait to get to know her better.

Two Pound Party

NICU Day #17 of 127

My Aunt Maureen is so silly. She brought a 2 lb. pumpkin with a painted face and 2 lbs. of M&M’s to celebrate! Everyone is very happy that I am gaining weight. It seems to be one of the most important things right now.

Auntie MoMo brings a present almost every day. Yesterday she brought a little pink pig. She calls him piglet. He’s on top of my box so I can look him when I’m lying on my back. On the roof of my box is a picture of my mommy and daddy. I love to look at them all day.

Every day my mommy and daddy can hold me – only once a day – but it’s wonderful!

New Friends

NICU Day #19 of 127

I realized that there are other babies in this room too. Mommy has made friends with some of the other mommies and daddies. Griffen is next to me. He and I are almost the same size. His mommy lives far away, so she and his daddy can only visit sometimes. Griffen cries a lot when they are not here. He misses his mommy and daddy very much. Jaycee is a 28-weeker like me, but she is lots bigger. A new baby arrived today, her name is Amelia. Across the room is a baby named Grace. I think we might be friends some day.

Constance is next to me. Constance is very sick. OH NO!!!! Constance’s alarms are going off. “PLEASE HELP HER! Someone come quick! Constance needs your help! Constance’s alarms are all buzzing, something is very wrong!” Okay, here comes a nurse – it feels like hours until they can get Constance breathing again, but I’m sure it’s probably just seconds. I am sad for Constance. Most of the time she is all alone. She still has the tube in her throat. The nurses say that she has been here a long time and they have no idea when she will go home, if ever.

Kangaroo Care

NICU Day #20 of 127

I love to be held by my daddy. He feels very different than mommy. When he holds me skin to skin they call it “kangaroo care.” Daddy is pretty hairy and sometimes his hairs tickle my nose. We like to sit in the rocking chair where he talks to me just like I’m a big girl.

The Seattle Mariners are in the baseball playoffs against the New York Yankees. Daddy was given tickets to the first game of the series and he wants to make sure that I don’t mind if he goes. He also tells me about Christmas and all about my cousins and aunts and uncles and even a little bit about Santa. Daddy says I’ll be home before Christmas. I can’t wait!

The Blues

NICU Day #22 of 127

OOUUCCHHHH! What now? The nurse is telling me that I have to have another blood transfusion. They can’t find any good veins, so they put the needle in my scalp. It doesn’t feel very good, where are my mommy and daddy?

I can feel mommy sitting near my box. There will be no holding today because of the transfusion. The doctors and nurses are adjusting my medicine because I started my ABC’s yesterday. A=Apnea (stop breathing for at least 20 seconds), B=Bradycardia (low heart rate) and C= Cyanosis (blue baby). This is normal they tell us, but it sure feels like my health is sliding backwards instead of making progress.

Mommy looks very sad. She opens up the portholes and touches my tummy. She is staring out the window next to my bed watching the rain and the wind. She says it’s a terrible autumn day, and that pretty soon it will be winter. She remembers checking into the hospital at the end of the summer and watching the summer turn to fall. She wonders aloud how many seasons will she witness while she sits at this window. When will I go home? Will I ever go home?

ABC's

NICU day #25 of 127

I still have this icky pin in my scalp. It’s not fun but I guess better than having to go through it again if I need another transfusion. My apnea seems to be under control, or at least the nurses say so. I’m not convinced – it’s pretty scary to stop breathing for no reason several times a day. All of the alarms and beeping noises scare me too. The day I had a cyanosis episode I thought mommy was going to faint! It was the loudest alarm I have ever heard. It scared mommy so bad that she wanted to call daddy immediately but couldn’t remember his phone number! When she reached him he came as fast as he could. The doctors keep reassuring mommy and daddy that ABC’s are completely normal for premature babies. It’s good to know, but doesn’t make any of us feel better.

Four weeks old! 2 lbs. and 8.6 oz.

NICU day #28 of 127

The doctors say that I am almost stable enough to be moved to Providence Everett Medical Center so I can be closer to home. My mommy and daddy are overjoyed! I have to do my part of course. I need to weigh at least 1200 grams (2 lbs. 10oz.), must be apnea free for 2 days, and can manage full feedings through my nasal tube. “I’m going to do my best mommy! Daddy I know I can do it! We will be in Everett soon and closer to home!”

Bad news. The insurance company won’t cover the expense of an ambulance to move me to Everett. Mommy, daddy, Auntie MoMo and grandma are heartbroken! But daddy says we aren’t taking “no” for an answer. The best thing for my health and the health of our family, is to be in Everett. After a second rejection, mommy and daddy tell the nurse that they will pay for the ambulance themselves – it’s that important to move me closer to home.

Moving Day!

NICU Day #33 of 127

MOVING DAY! I knew I could do it, I weigh the magical 1200 grams! I’m not on any apnea medicine, I have all of my feedings by nasal tube, and I am now in the gaining and growing stage!

Daddy was here this morning but he had to go to work, but he whispered in my porthole that he’d “see me in Everett later today!” There’s a lot of hustle and bustle to get ready for the move. Lots of paperwork, and mommy has to watch a safety video, but the good news is that while they are getting my ride ready, mommy is holding me for a long time!

This is the scary part. I’m in a new, colder plastic box and I can’t see very well. My body is strapped down and it’s uncomfortable! They are wheeling me out to the ambulance and mommy tells me that she can’t wait to see me in my new home in Everett.

Mommy has to take her car, so it’s just me and my nurse and the two ambulance guys. I’m excited to get to Everett, but it’s pretty scary leaving the hospital that was my home for the past weeks. Hey it’s bumpy! Stop that. I can barely hold on. The nurse is staring at my monitors to make sure I’m okay. Good thing they gave me a little medicine to relax me during the long ride. I can see the flashing yellow lights from on top of the ambulance, but they only have to use the siren a few times. It feels like it is taking weeks to get there. I sure hope mommy and daddy will be there when I arrive.

Wowww! This new place is pretty cool. I like my new box. It has an elevator and is all digital. Mommy is very excited. She gets to put clothes on me for the first time ever! It looks like I have a lot of choices. Many people have supplied preemie clothes. Most of them look way too big, but someday they will fit.

One of the best things about this new place is that it is very quiet. I can’t believe it. I haven’t heard any alarms or beeping yet. The quiet is deafening.

Clothes at Last!

NICU Day #34 of 127

I love my new home. Grandma and Auntie MoMo live so close that they can visit me anytime they want!

Today I’m having a new treat, my first bath. It’s pretty cold in the open air, but I love the warm water and the wash cloth that covers my body is soft. Daddy gives me my bath while mommy is anxiously to dress me for the very first time. They keep telling me how pretty I am!

We are all so happy. It feels like everything is going really well. We hope I’ll be home very soon. I have a lot of growing to do, so I need my sleep and plenty to eat.

I feel Icky!

NICU Day #38 of 127

I don’t feel well today. I’m really tired, and my oxygen prongs are bugging my nose, and my tummy feels hard and round, and it’s hard to breathe sometimes. My alarms are going off and mommy is worried. She asks the nurse why this is happening.

The nurses tell mommy that I can’t “tolerate” much handling right now because I’m over stimulated. Mommy can’t hold me today, maybe tomorrow if I’m feeling better.

But mommy can still help take care of me. Every three hours I need to have my diaper changed, my temperature checked, and my feeding tube started. Mommy holds my head while the food is dripping into my throat. It feels good to have her here.

Three Pounds!

NICU Day #40 of 127

I am feeling better now. I guess I was getting too much food, and my body couldn’t process it fast enough. So the doctors have decreased the amount of food they give me. Mommy and daddy met with the doctor today to talk about my progress and expectations. They think I will be home for Christmas! Preemies usually go home around their due date, so maybe just 6 more weeks to go! It’s very exciting.

The biggest obstacle is that I need to learn to drink from a bottle. I tried it today but it didn’t go well. I can’t remember to breathe when I have the bottle in my mouth which makes the alarms go off which in turn scares me and then I cough and the milk gets inside my lungs which makes me worse. They said that we’d try again in a few days. I’m going to concentrate all of my energy on learning to drink from the bottle so that I can go home soon.

The Ongoing Rollercoaster

NICU Day #45 of 127

I am working really hard to take a bottle. The feeding therapist has decided that I’m only strong enough to drink once a day, the rest of the time my food goes through a tube into my stomach. I need to master the suck, swallow, breathe exercise. I just keep forgetting to breathe! The oxygen in my nose makes it hard too.

Aunt Nancy arrived today from Los Angeles. She is funny and puts her face right up to my box. She’s a nurse so she knows about what is going on.

I’m not feeling very good (again!) I’m a little weak and have lots of gas in my tummy. I love when mommy puts a warm blanket on my tummy when it hurts. The nurses let me have a few minutes without oxgen blowing into my nose. My nostrils are really sore, so they are holding an oxygen "blow-by" thingy to give me a break. I can't wait to be rid of all these tubes!

The doctors say that I am very anemic but they want to put off a blood transfusion to see if my body starts making its own red blood cells. I had another heart ultrasound today. The test doesn’t hurt, but the gel is really cold!

Why?

NICU Day #52 of 127

I’m having episodes of Apnea again (stop breathing for 20 seconds or more.) We thought this scary stuff was all behind us. Today the doctors decided they would give me caffeine to help stimulate my system to reduce the apnea.

The nurses also tell mommy that I’m gaining weight fast – seems like that would be a good thing – but unfortunately they think there is something wrong. (sigh!) I just want to get better! I want to breathe easily, I want the tubes taken out, I want to hold my mommy and daddy all day! Why can’t it be easier?

Thanksgiving Day

NICU Day #53 of 127

We are very thankful today that mommy, daddy and I are a family. We hope that we will be together at home very soon.

It’s disappointing that I haven’t been able to increase my bottle feedings. I hope that I will be able to try again soon.

Oh no! The doctors are telling mommy and daddy that I won’t be strong enough to take all of my feedings by bottle before Christmas. It looks like our dream of our first Christmas at home together is fading fast. We are all very sad. The nurses are being very nice, but everyone knows how much I wanted to be home by Christmas. Mommy is crying. Daddy is sad too. It’s just not fair. I’m doing the best I can!

Rocking Grandma

NICU Day #60 of 127

Today my grandma is holding me again. I love to sleep in her arms! It helps me forget about the eye tests this morning. I am so very tired of everyone poking me. I feel like the tests will never end. I even had to have shots!

My tummy isn’t feeling well. They stopped trying to feed me with a bottle to see if that would help. The nurses have put me in a swing, a bouncy chair and wrapped me in warm blankets to help my tummy, but nothing is working. I’m cranky all the time now. It’s not fun. I’m tired and my head feels heavy, “please just leave me alone. Let my grandma rock me for hours.”