Tuesday, October 26, 2010

October 26, 2010

Dear Lucia,

Today was a trying day! You are convinced you don't need the tube. You pull it out constantly. We had thought we'd never be able to change your tube and here we are re-inserting it as much as 4x a day! Curious baby fingers that are really into grasping lately do not work well with tubes on faces! You get upset when you are set up for a tube feed after a bottle, like why are we feeding you with that stupid thing. You hate it. You get so fussy and start angrily scratching at your face. It is so hard to watch. We hate that tube too!! I know you will do better with your swallow - you are interested in taking a bottle. You love it. It's just the thickened milk that tires you and bogs you down. I am trying to get a follow up appointment with a feeding team to see if you are still aspirating into your lungs. I am sure you are making strides. I hope this means the tube will be a distant memory soon. Today was torturous having to re-insert it so many times. You are a very calm baby for the most part, so seeing you get so worked up is painful for me. It makes me cry. We've been through so much - I just want to see things become easier for you.

That said, I love doing the average mom things. It's hard because people want to help me but I WANT to do it. I will be going back to work eventually and I won't be home as much. I want to do all of the mom stuff - spit up, diapers, feeding, burping, cradling, bathing. I won't have as much free time, and I'll need more help, but for now, since I'm home, I love taking care of you. It is tiring, and we have extra steps that other moms/babies don't have, but I LOVE being the one to do these things for you. I look at your face and I'm amazed by you. I am still in awe that you're here, six weeks later, that you're home. You seem to be doing so well. We had someone come by to do a developmental assessment and you seem on target. I can't wait to see all the things you will accomplish and all of the milestones you'll reach. I know you will be a rock star. You already are.

I love you.

Love, Mama

Sunday, October 24, 2010

October 24, 2010

Dear Lucia,

Your father and I celebrated our 4th wedding anniversary on the 21st. Do you know when he proposed to me a huge part of his proposal was an expression of how he wanted so badly to have a baby, to have a family of our own? He proposed on 11/5/05, and we knew we wanted a family for so long. Finally it feels complete to have you here. Yes, pets outnumber humans in our house. They probably always will. I'm sure you'll be an animal lover like we are. You seem curious about the pugs and cats now, and I'm sure you'll be fast friends when you are older. You are such an amazing addition to our family. We have everything we need. We have waited for you for so long, and you're here!! Every day feels like Christmas. I wake up and you are sleeping soundly next to me, and I peek in on you often. Or you are wide eyed and awake. I turn on your little bassinet light and you are laying there looking at me. You are not fussy for the most part. You are so easygoing and calm. You are very curious in your feeding tube, however. I cannot WAIT for this to come out. It's got to go! We want to take you to so many places but it's more complicated because of your feeding. I hope one day I can breastfeed you. I'm staying hopeful. It's one thing you've taught me, it's to be hopeful and to believe in things you'd never think were possible.

Early intervention from NJ is coming tomorrow to assess you and see if you have any special needs. I think they will find you to be the picture of good health. Your pediatrician sure seems to think so. I'm not going to worry. I'm watching a video my friend Tish made of you, a tribute to your life so far, to the miracle that is you. I can't believe the ride we've had so far, you and me. I never gave up hope on you, and I am so glad. I think my love and my faith in you had a huge part in your healing. I touched you,held your hand, kissed you, talked to you. I never left your side. I know you were aware of that. These are things which baffle doctors - they don't know how/why you turned around. So Early intervention is coming because of the severity of your HIE and your traumatic birth. They will be surprised too. They won't believe that love healed and saved you. You healed and saved me.

I love you so much. You are more and more beautiful and alert each day.

Love, Mama

Monday, October 18, 2010

October 18, 2010

Dear Lucia,

You continue to amaze me. In all of the pictures we take lately, you look so beautiful, so alert. That's the word that everyone uses: alert. You are wide-eyed, interested in your surroundings, engaged. You are everything that the doctors didn't think you would be. I again was thinking back on the past 5 weeks, and I'm amazed by you. I can't believe how far we've come these past 5 weeks. Taking a nap with you today, you were very interested in using your hands. You kept distracting yourself. You like pulling my hair, touching my face, trying to root/suck on my fingers. You are using your activity mat. You love taking in all that is around you. I'm struck by how beautiful you are. I was just telling your daddy that we are going to have our hands full when you are a teenager.

I love you baby.

Love, Mama

Thursday, October 14, 2010

October 14, 2010

Dear Lucia,

Wow, having you home is so much fun! It's a lot of work but I'm not as tired as I'd thought I'd be. You really sleep well through the night. You are on scheduled feedings every 3 hours so it's a little easier than other babies. You don't wake me up hungry and if you're sleeping, you don't notice your diaper is wet. When you awaken though, you are pretty upset if you find out you are sitting in poop! You really don't fuss that much at all. You are a very content, laid back little girl. You cry your eyes out during most diaper changes, but the second you are back in clean diaper and clothes on, you look at me wide-eyed and relaxed, like "oh ok, that wasn't so bad after all." You had your first bath at home the other night, and Daddy and I had so much fun setting it up, however, you screamed during that whole time as well. You don't like being naked and cold. Afterwards, we bundled you up in a towel and you were so warm and snuggly, smelling so sweet, and you were the coziest bundle ever. Even as much as you fussed and cried, afterwards, you were calm and relaxed.

You had your first pediatrician visit on Tuesday night. The word she used over and over again to describe you was "phenomenal", meaning if she didn't know you had been through this ordeal she never would have guessed judging by your exam. She said you look wonderful and healthy. These are all the things Daddy and I need to hear. This is music to our ears. You have to know that I was a little nervous going to the doctor's. After spending the past month in the hospital, I'm pretty sick of doctors, and I was a little scared to see what they'd have to say. I couldn't take any bad news. Lucky for me, I didn't have to. They only had amazing things to say about you. You continue to be a miracle and baffle doctors.

You ARE making milestones every day. It's amazing. You are really into holding your head up when I hold you on my chest. You love following my voice from across the room. You love to grab at things, including your pacifier as you hold it in your mouth. Showoff! :) You love tracking objects in bright and contrasting colors. You love your bouncer, the vibration and the ocean sounds very much calm you. I wonder if it reminds you of my womb. You love music, or at least you seem to be calmed by classical music. I wonder if you remember it?

You are such a beautiful little girl, and I marvel at you every day. I love you so much and am so happy to have you home with me and your Daddy. Our wedding anniversary is next week, and I couldn't think of a better gift for both of us than having you home with us!! We love you so much, Lucia.

Love, Mama

Tuesday, October 12, 2010

October 12, 2010

Dear Lucia,

I haven't written in a few days because I've been busy now that you're home! They told us Friday morning that you could come home on Sunday, 10/10/10 (what a lucky number!). We had a lot to learn so we could take care of you well. You are still feeding on the NG tube but you took 15 mL by bottle last night with daddy! I'm so proud of you. We will work with you on the bottle and every day you will get stronger and you can do it. Now you are home. You had your first bath last night. We are getting to enjoy the things we've waited so long to do with you! I enjoy just sitting with you in the middle of the night and even though you're on the tube and I'm breast pumping, it is nice just to sit in the quiet, the two of us. I'm glad to just be with you and touch you. I'm so overwhelmed. 4 weeks ago yesterday you were born and I didn't think I would have these opportunities. I'm so blessed. You are such a wonderful little angel baby. I have a hard time reading your discharge papers because I see how sick you were at birth, how low your Apgar scores were (2 and 7!). I don't want to dwell on those things though, because you are so much stronger and healthier now. They wouldn't have let you come home to me if you weren't. It is hard to see what you went through though. But you are so amazing and resilient. You have your first pediatric visit tonight! I look forward to you passing all your milestones gracefully and with the strength that you display over and over again. I am stronger because I am your mama. I couldn't be more proud of you, and you give me strength every day.

I'm so happy to be home with you and just sit with you. I love you.

Love, Mama

Friday, October 8, 2010

October 8, 2010

Dear Lucia,

Well, today the doctors told me they want you to go home on Sunday. I'm very nervous and scared. I feel responsible in a way that this happened to you. You were safe and sound in my womb and something happened and I couldn't protect you. Everyone in the world can tell me not to feel guilty but I will. I can't help it. I'm your mother. You were inside of me and I should have saved you. And I couldn't have, and it feels horrible.

That said, of course I am proud of you my little angel. I remember thinking that you would not make it until I got there from my hospital to see you. You and I were in separate states hours after you'd left the place where you lived for almost a year: my uterus. You were warm and cozy in there and you were ripped out and thrown into cold sterile hospital rooms. You needed blood transfusions, plasma, platelets. You were given very little chance of surviving. You confuse doctors with your current strong state. No one understands how this happened. The same doctor who told me over the phone that I needed to hurry to you because you were very critical, couldn't tell me anything positive about you at all was the one who stood beside me last night and shook her head and smiled. She doesn't have words for your recovery. She doesn't get it. By all of their measures you shouldn't have made it. You are an angel and you have only gotten stronger each day!

You did aspirate milk into your lungs and had a swallow study. Apparently it's common for babies in NICU who have had problems breathing to do this. The swallow reflex is weakened. We have a few extra steps to your care as you come home and I'm nervous but I'm sure I can do it. I'm your mom - I will gain my strength and courage from you. I look at how strong you are and I have to gain some strength from it. You are amazing. All you do is prove people wrong, fight overwhelming odds. I will learn from you. You will give me courage and strength as you have all along. We have a special bond, you and I. I love you, my darling angel.

Love, Mama

Tuesday, October 5, 2010

October 5, 2010

Dear Lucia,

Today you tried your hand at a bottle again. You had a little difficulty with the second nipple. I have faith that you will take to it like a pro. You're only 3 weeks old and I have no doubts that you will learn and thrive. This, I'm told, is the only thing keeping you in the hospital - you need to eat, to take bottle or breast. You did such an amazing job with the pacifier. We tried pacifier dips with breastmilk to peak your interest. Sometimes you did a great job and sometimes you lost interest. You are so strong. You can totally do this. When I come into the room each morning, all I hear is good news. I am spoiled by your progress. You are sleeping through the night. You are easily consolable and not fussy. I am sure this is your demeanor and not the fact that you are still on some sedation. You are an easygoing baby. Your cry is still soft, but you are working on it. You have so much to say.

Talking of you going home? Wow. I sat and held you and felt amazement. 3 weeks ago we weren't sure you'd make it. I was trying to prepare to say goodbye to you, to make difficult decisions.

Thanks for proving everyone wrong! I love you.

Love, Mama

Monday, October 4, 2010

October 4, 2010

Dear Lucia,

Today was another big day! I am trying to keep up with all of your tricks so I can document them. I can't believe that today, around the same time you were born, you reached another huge milestone! You were able to suck on a pacifier with a little of my milk on it. You worked with a speech therapist on your sucking motions. The doctors were worried that you didn't have a gag reflex but you definitely do! How could they tell anyway with that tube down your throat? I'm pretty sure you did gag; you threw up quite a few times, after all. Next, after you mastered the pacifier, you showed us how you can drink milk from the bottle too!! You are so amazing - you drank 30 mL of milk! I get to give you another bottle tomorow and then eventually you can breastfeed, once we establish that you can swallow and not gag or throw up.

I can't believe it's only been three weeks since your birth. I do celebrate every week because every week is a gift. Every day is. I'm still blown away that you are here, fighting, making me proud, showing the doctors. 3 weeks ago we weren't sure you'd make it through the night. I wasn't sure of anything. Now here you are, showing everyone you are the boss, you are strong, you are a force to be reckoned with.

I feel pain when I have to leave you at night. You were crying when I left tonight. There are not enough hours in the day. I just want to hold you and kiss you and make up for all the pain of your birth, make up for all the lost time. It may seem short, a couple of weeks, but I feel I have to. I look at you and I well up in tears. I hate that you went through all this at such a younge age. I know it's not my fault, but I'm so sorry. I hate that you had to endure this. You look back at me as if to say that it's ok, you're tough, you're strong, you can handle it. I love you, and I am so sorry that you went through this. I will spend the rest of my life making up for this partly because I feel bad and partly because I will never take a second of time with you for granted. This has been such an emotional roller coaster, the past three weeks. I'm glad you are doing so well and there is a light at the end of it all. I try to focus on that when I get overwhelmed. I can easily cry from joy as easily as I can cry from sadness these days.

I love you! You keep fighting, Lucia!

Love, Mama

Sunday, October 3, 2010

October 3, 2010

Dear Lucia,

Wow, you are almost three weeks old! I can't believe it's only been three weeks. So much has happened. You have come so far. We have come so far. You have taught me so much about strength, faith, love. You have taught me what it means to love. I could sit here and reflect on all the things I could have done differently and wonder if things would have turned out differently, but you have filled me with such strength and courage that I never thought was possible. You've given me renewed sense of optimism despite such overwhelming circumstances. I am not an optimist, usually.

See, your daddy and I have hit some tough times in our lives, and these tend to be the periods that test us, our wills. We have, however, gained such strength, individually and as a couple during these times. You are a little angel. You will never know how you have brought people together who otherwise had drifted apart. You gave me hope when I had none at all. This is the toughest thing your daddy and I have gone through in our lives - the thought of losing you is the scariest thing I can imagine. To see you suffer or go through any pain is beyond heartbreak. You are the most beautiful little baby ever, and I'm not just saying that because you're ours. Your birth was beautiful no matter how scary it was. Your daddy and I held hands and looked in each other's eyes. I was so numb from the spinal that I didn't know they had started my surgery. He rushed in to make it in time for your arrival. He was still in a suit and I was so relieved to see him and it was funny to see him in blue hospital scrubs. I'm not ready to relive the pain and fear that followed because right now, I want to focus on the blessing, the joy. You are named after light and hope. Doctors kept asking if your name came after your birth, but it didn't. Your name was well planned. We are so grateful for you and you have given us so much in the three weeks since you were born. You have taught us what it means to truly love someone with your whole entire being. You have given us a deeper love for each other and strength that I never thought possible. You are the strength I need to keep going. I see you and I can't feel sad, I can't feel weakness. I can only feel pure love and joy, no matter what. No matter that I'm holding you with tubes and hospital furniture and beeping machines. You are so beautiful and I'm so proud to be your mother. I will say this probably one thousand times throughout this blog, because I am so very proud of you, Lucia. You will probably never comprehend how much, and this is why I need to repeat it often.

Lucia, this is why I can't focus on the negative - you were the light and hope of our lives before you were born. We all seemed to sense that you were a girl. :) Whenever we'd have an ultrasound, your daddy and I were so amazed to see you, we'd treasure those moments, those little glimpses at you. You brought so much joy to us (that was the other middle name choice I loved, Joy) and gave us so much to look forward to. We could not even (and can't still to this day) wrap our heads around the idea that you were in my belly, that we'd FINALLY have a baby. Every time we'd see you on the ultrasound and see your chubby cheeks or your cute little feet we were blown away. It felt so surreal. I remember your heart ultrasound, seeing how strong and steady it was and feeling so connected to you, seeing your strength symbolized in that solid heartbeat.

Tomorrow it will be three weeks since your birth. I can't believe it has only been three weeks. So much has happened - You've blown everyone away. You have a whole following on facebook - do you even know that? You're a diva at <3 weeks. I cannot express my gratitude to everyone for support because this has been a rollercoaster, and I couldn't make it through without their love and kindness. This has been a long road, but I like that there is a light at the end of the tunnel now. You are that light - you've been flickering quietly this whole time, and now you are burning brightly, strong, healthy, a force to be reckoned with. Some day I will write more about your birth but I don't want to dwell on any pain right now. Because one day, I will take you home and all of this will be a distant memory - the pain part anyway. I will never forget the lessons that I take away from this, the love that I feel for you. I will never take for granted a single moment I get to spend with you outside of a hospital. Ever. You are so precious to me, and I love you beyond words, Lucia Hope.

Love, Mama

Saturday, October 2, 2010

October 2, 2010

Dear Lucia,

What a busy Saturday you had!! Daddy brought your swing and your bouncer. You got a lot of attention and love. We changed about 3 poopy diapers in a row. Now both of us are half asleep - well maybe you are fully asleep. I'm trying to rest and it's tough - I just want to cuddle and hold you but I'm so sleepy. I'm also feeling so sore. It's difficult to rest when I just want to hold you and spend time with you. We both need our rest!

I can't believe how lucky and blessed we are. You are such a miracle, so amazing to see you so strong and fighting. One week ago, I was so scared of losing you and now you don't even seem like the same baby. My parents don't recognize you. So many changes within one week. You are stirring in your crib as I type this and again, I contemplate picking you up but again, I need to rest.

I love you. You never cease to amaze me!

Love, Mama

Friday, October 1, 2010

October 1, 2010

Dear Lucia,

You are breathing on your own!! This is a miracle. A week ago, they didn't think you'd be able to breathe on the vent and now you are fully breathing your own breaths. You are having the tube taken out this afternoon and going on the nasal cannula. I am so amazed. Also, your daddy had a positive interview and probably will be starting his new job soon! Things are turning around for us and for our family. I can't wait to take you home.

12:30pm your tube was taken out. They sat you up and for once, I could see your face, your big cheeks without any tape on them!! You sad there, wide-eyed, so cute, not sure what to make of it. You let out a squeal - a very quiet, hoarse squeal. You are learning the power of your voice, and you will be raspy for some time but then we will hear you loud and clear. I think you have so much to say. You've let out such cute little sounds, squeaky protests to diaper changes, hoarse coughs. I'm sure you'll be loud and clear in no time.

Also, we can bring your swing, bouncer, swaddle you... We can finally use all of the things we have at home. We can finally begin to enjoy spending time together as a family and spoiling you as our baby.

I miss you - I hate staying here in a different place, under a different roof, where I can't peek in on you and give you kisses.

Keep on fighting - you make me so proud.

Love,

Mama