One Month Old

Today is my baby's 1 month birthday! One month already!!! Time just flies - this has been the most sleep deprived month of my life! I never knew I could be so exhausted. I wrote this entry a few days ago, but I will post it now and go hug my little guy while you read it...

It is so hot this summer! This summer just hasn't been what I thought it would be at any point in my journey. I usually love the fresh Colorado summers - yup, some of those days are HOT but some days are just amazing and remind me why we live in this state - we have a crisp coolness that comes in at night and makes the hot day worth it. But not this summer with so many dry days and in between my life staring me boldly in the face, I have seen and heard of the wild fires that have been so desperately terrible and have ravaged others lives. I feel bad that I have been so caught up in my own world and haven't even thought about the fires as much as I probably would have any other time of my life.

It seems like everyone's summer has been different than planned - and mine really has! Almost a month has gone by and I find myself at a completely different place than before it began. I am going places I didn't ever before imagine and I am doing things I never even thought of.

Am I being guided? Is this part of the plan for my life? I never saw myself traveling this way and meeting the people that I now am. We had an evaluation last week with our case worker last week - I wondered to myself, what can they possibly evaluate at 3 weeks of age?? He is so small and the thought of needing physical and speech therapy at this point seems odd. But they actually made me feel better and feel more hope for everything that my little Taco will be able to do! He can lift his head and he has actually rolled over! And they were really impressed. But then the other side of me hurts because I know I wouldn't be at this evaluation and I wouldn't be worried about all these little things if he was a typical baby. I never saw myself in this group of people - it is new thing for me and everyone is so kind. But a part of me doesn't want to be a part of any of it and I just want to imagine soccer camps and baseball and everything I saw myself doing a couple of months ago. I didn't imagine giving all that up for therapy sessions and meeting with other parents of Down's kids. But in the same breath, I feel very lucky to meet these people.

Like Kelly - I met Kelly shortly after Blake came in to the world and I couldn't believe what a staggering coincidence that we would meet, be in the same area, be the same age, and have such similar backgrounds. Why? Because Kelly had a Down's baby just before I did, in the SAME month! Her son and mine! Both an unexpected surprise! When we met, we both just burst into tears! What was the likelihood of this happening? What was the chance of us living so close to each other in the same town? Both of us are so thankful that our little guys will grow up together and be friends. Like it or not, my first thoughts were whether or not my little Taco would have friends - would he have someone to play with and build forts with? Would he have a friend to have sleep overs with and share birthday parties? Everybody assured me that he would be loved and accepted and I know that there are so many good people in the world, but there is also reality and I was so worried that my little guy would be loved and accepted. I want the best for him! What parent wouldn't, right? So with meeting Kelly and her son, I know that life is going the direction it should for me - not necessarily what I envisioned, but a new path and hopefully a better path.

A Picnic

Dan and I went for a picnic with our little Taco last week! What a fabulous feeling to get out and feel a bit of normalcy! These past few weeks have been so draining physically and emotionally. I guess the most overwhelming feeling lately is that I have a baby! I have a little 6 pound bundle that relies on me for EVERYTHING! Our lives are divided into 3 hour segments, start to start! Feed, Play, Sleep and Feed, Play, Sleep and around and around it goes. And Taco is very demanding if he doesn't get what he is looking for right then and there!

It cracks me up that he has so much personality and expression at this age. He is so small but he can voice his opinions very well. From not wanting to burp while he is eating, to looking at an object with such intense interest, that nothing can break his concentration.

I love watching his eyes take in the world - he is such a sweet baby. Of course he has his crying fits, but mostly he smiles at us and he seems to get excited when Daddy comes over to hold and play with him.

So more than the Down's diagnosis, I find myself just realizing we have a new little life in the house. That diagnosis has faded a bit in its intensity of making its presence known in our lives and it leaves behind a warm good feeling of knowing I have a little life that is dependent on me and who is so full of love and life! I can't believe he is mine - it is such a strange feeling to look over while I am making lunch and see little arms and legs kicking and feeling out the world. I really have a little guy to love and hold and I know how very lucky I am!

We took some Subway sandwiches down to the lake near our house and just had a wonderful time. I hope you enjoy the pics I snapped while we were there. It was such a joy to watch my little guy sleep away the time and he didn't seem to mind that I took about a 100 pictures!!

Feeding time...

I just have to share what a joy it is to feed my little Taco - or as I like to refer to it, stuffing my Taco. He cracks me up. First he just smacks his lips 9 million times until I get his bottle ready and then we are off to the races. His favorite thing to do first is to lunge at the bottle like a little snake - he swings his head back and forth and then lunges in to grab the bottle and go at it. I am usually cracking up so bad at this point and still trying to hold on to him. Then comes the burping that we try to do every couple of minutes or so. Taco HATES being burped! He swings back and forth and raises up on his little legs and looks at me like I have to be kidding him! All he wants is that bottle and I am being woefully slow and inadequate in the process. After we succeed in raising a small burp from him, it back to his normal sloppy sounds and sweet noises. It just makes me so happy to make him happy.

A friend of mine wrote a letter to little Blake and it really touched my heart - I know it will touch yours too and so I will share it with you...

"Welcome Blake! I believe you can hear the angels sing, and other special things that most people can't enjoy - and that's how very special you are! What a blessing you are, and always will be. Enjoy life! Enjoy the flowers, the smell of fresh mown grass, the flurry's of winter snow, the majesty of a sun setting in the west in glorious golds, reds and blues. These things will be such a joy to you! And to all those around you who get to enjoy YOU as you grow. I remember years ago, there was a weekly TV series about a young man who is just like you! But he called his condition, UP SYNDROME! May you always be "up" in your world, buoyed by the love family and friends.

I love you, and you don't even know me. But hopefully, someday we'll meet, and we'll hold hands and giggle, and the world will be a better place.

Your friend, Jan"

So my little Taco has "Up" Syndrome! I love that! And truly he does lift me up! He makes me laugh and smile so much more than before. He is such a joy already with little smiles and small noises. He already is trying to communicate with me and I am so thankful for him and I love him so so much!

Dan, my hubs, had such an insightful comment last night - we are imagining a different child and all the therapies and things we will need to do to take care of THAT child and all the hurdles to cross.. But it isn't just any child in the future - it is our Blake. The Blake that is cuddled up to my leg right now as I type away on my laptop; the Blake that makes those sweet little gurgling noises and smiles at me when I feed him, the Blake that has started to coo as if he is realizing he has a voice with which to communicate to me. It is my Blake in those future pictures and my Blake that I love so much and feel such a fierce connection with. So I realize it will be ok...he is mine and I love him more than words can express. I can't get enough of him and ache to be with him when I am apart. He grew under my heart for 9 months and I miss his closeness - it is so hard not to have him there again.

So I will focus on the next feeding and the next diaper change...I can do those things. I can learn my baby as any mother would learn her newborn. It isn't all that overwhelming to change his onesie and live just this moment. It isn't too much to change that poopy diaper and clean him up. I can look at his sweet face and I can hold his tiny hand and I feel complete in this moment. And the future? It is just that! The future! I don't need to look at it right this minute when I have this beautiful bundle next to me.

So many thoughts...

We are officially sleep deprived! It is day 10 since my little Taco's arrival. We have been to the doctor or hospital pretty much every day but Sunday and I have seen more blood drawn out of my little boy than I can stand! It is so hard to watch all of that. But beyond all the stress of knowing he has Down's and hoping I can care for him adequately, we just have newborn stress! He cries all night and sleeps all day and I am not sure how to change that schedule up! And on top of it, we have a loving stream of visitors all day - which I enjoy, but by night, I feel a tired I didn't know existed! Wow! It is amazing! My eyelids officially have a mind of their own and close at will!

But we have so many people bringing meals and love and saying so many sweet things about our little Taco.

As the days have progressed, my feelings still swing around a bit. I have such a peace about his condition - such an assurance that his spirit sought ours and that he was given to us as a trust from above. I have no doubt that this is actually an honor - when I hear that I won't be given more than I can handle, I realize that providence thought I could handle this and that is a huge compliment. But on the flip side, I am fearful and tired and worried and every little thing makes me jump! I am scared and overwhelmed and I have never cried so much in my life. I don't cry - anyone who knows me, knows that! It's not that I am not emotional - but I am a musician and I know how to let my emotions out in a controlled way when I am performing or just living life! But it seems my emotions have over flowed my bowl as of late and they just spill out of me with little control to be had. A song, a look from my little Blake, a fear that crosses my mind and sticks with me like a burr have made it impossible to reign myself in! But when I was in the hospital I remember that nurse that told me just to feel what I do and not judge myself, and that helps.

My little man wants breakfast and I do too...

Today we get to come home - a whole day early! I am so excited to bring my little boy home. I am tired of being checked up on by a nurse every 15 minutes! Take my blood pressure, take my temperature. Take Taco's temperature and check his heart. Has he been fed? Am I ready for my medicine? It is constant and although I know this are amazing nurses and they have done such a fine job of taking care of my little man and me, I am just ready for my own bed and my own house and finding some sense of normalcy again. :)

I feel tears as we walk thru the hospital doors - such a sense of relief to be walking out. Every time I have driven by the hospital in the last 3 months I have felt concern and worry - fear of the unknown and fear of what would happen. And now my worst fear with a c-section has come and gone and I survived and I have a sweet little man to show for it. I look into his face as we wait for the valet to bring our truck and I am so in love with him. It doesn't matter what path we have ahead. I can do this and I will be strong for him.

Dan's mom is at our front door to photograph our arrival. It feels so good to see my home again. I can't believe this is real and true and we are here. I feel relief and joy and as I bring my little Taco into his room, my tears spill over - there is so much love here. Love for my baby boy and an outpouring of love from so many friends and family who brought this room together and made this a gift of love to Blake. It is decorated in monkeys and browns and greens and blues and I am so excited to show it to him. As if he knows, Blake opens his sleepy blue eyes and tries to look around. I tell him this is his room and he is so loved. Maybe it is my imagination but he looks wonder struck and it just makes my heart twist. He is so sweet and I am so thankful I can give him this.

Losing it...

I felt so at peace with the diagnosis at first - I knew I could handle it and this was the path I was supposed to walk. Then two days later, I went on facebook and accessed a page that I have been following for the past 4 months - June 2012 babies. I have loved that page. I get on every day and read and post about pregnancy woes and ailments and gripe and complain with the other girls about having to pee every 10 minutes and feeling like our weight just keeps climbing. I love reading their responses and laugh along with their stories of our shared ailments. The last month has been especially fun as the babies have begun to appear - so many wonderous little faces with such unique birthing stories and so much joy behind them! The girls post birth weights and lengths and post the stories of how they finally just knew it was time to head for the hospital! I feel at once happy and jealous! When will it be my turn?? I feel like I am going to be pregnant for the rest of my life!!!

But two days after Blake is born, I notice my facebook feed filled up with posts from this June board and I click to read the newest post. And that's when it hits me. These woman are struggling with feedings and when to diaper change and how many sleepless nights they are having and I realize I am no longer one of them - I am not just a "normal" mother any more and my son is no longer a "normal" baby. What does normal mean anyway? What a horrible dreadful word! I hate that word! He's normal to me! But I suddenly realize, no one else posted about a Down's baby...were they afraid to mention it? Did no one else have this happen? They say one in 300 babies is a Down's baby - there are 300 woman on the board - maybe I am the ONLY one and I feel a deep down sting and pain and tears spill over my cheeks. This wasn't supposed to happen and this wasn't the path I had imagined and I feel so sad. I wanted my son to be "cool", to have the things I imagine for him and the life I ache to give him. This isn't every what I imagined - I skipped those chapters in my pregnancy books. I never once considered this reality and yet here it is.

I close the facebook board and I don't think I will ever post my story - it is too hard not to be one of them.

The Advent of Blake Alan Swanson

Last week, my life changed forever! It was bigger than just giving birth and bringing a little boy into the world! It was bigger than everything I imagined my life to be after deciding to start a family... but let me back track a bit...

Dan and I decided after much deliberation thru the summer of 2011, that we did indeed want to start a family and find out what it was like to bring a little person into our lives. After a quick 2 months of making that decision, I took a pregnancy test and was thrilled to see it was positive! That was October 20th. But I didn't believe the test and proceeded to take 3 more to be really sure!! I didn't tell Dan right away since he was on a business trip. But two days later he came home and to surprise him, I tried to order a pizza. My gift card failed when I tried to enter it and I hung up in frustration! I actually started to cry about it!! Dan looked flabergasted and asked why I would cry about a dumb old pizza!? I don't cry about much of anything normally. He asked, "What's up?? Are you pregnant or something?" And I proceeded to blurt out a teary, "YES!" and Dan grabbed me and whirled me around in utter joy.

We found out it was a boy on February 8th and we named him at that point - Blake Alan Swanson. My husband Dan's first words, "That's my boy!!" and pride dripping from every syllable!

My pregnancy wasn't easy and I didn't enjoy being pregnant. Although I delighted that my body was able to enter into the miracle that is making a life. I had 2 infections early on and was so afraid of losing my little one. And after that I had so many discomfort issues. I found out later that I was having contractions from about the fifth month on! I am so glad that I didn't know they were contractions or it would have caused my anxious brain a lot of nervous worry and stress. I ended up going to triage in the 8th month after a morning of not feeling my baby move and they told me I was having contractions ever 3-4 minutes!! I had been having them for months and honestly thought it was the baby moving around! Little Blake was fine; just taking a nap they said. But he scared about a year off of Mommy's life!!

The last month was so hard - so much pain and so many contractions! I sat and sat and grumbled and cried and wished the whole thing would just end already! Little did I know, the end was soon in sight. On Thursday June 21, I went to my regularly scheduled OB appointment and during the measuring my doctor was shocked to find I was measuring only 35 weeks big when I should have measured 39. I think she freaked out a little and I was hoping it was just my baby dropping into my pelvis. The doctor immediately ordered an ultrasound and the next day, I awoke just knowing that everything was most likely fine and I was going to be pregnant for the rest of my life! Everything was hurting and huge and annoying. I went to my ultrasound and they said that I was indeed small and my little one was most likely about 6 pounds in size. I was sent back home and told the doctor would call in an hour with the results.

I didn't think anything about it - I already just "knew" that they would call and tell me all was fine and probably labor was out another 2 weeks. Ug! So tired of waiting and feeling huge!

I ate a huge lunch and surfed the internet and watched tv. About an hour later a 1pm on Friday the 22 of June, my doctor called and asked if Dan was there...I felt a little tilt in my world. That couldn't be good if I couldn't hear the news without Dan there... She proceeded to tell me that my amniotic fluid was low and I was measuring too small and with all my contractions, she had decided to induce and that I should go to the hospital within the hour. I just freaked out!!! But in my way of coping, I just knew I had to clean! So I calmly cleaned the kitchen, texted Dan to come home, watered my plants and took care of my cat, Crystal. I put my things in a bag and remembered everything I needed. I was pretty panicked, but those tasks always calm me! Stress equals cleaning in my world!

A nervous husband drove me to the hospital and we settled into our room and I was hooked up to a bazillion monitors, and an IV. It was so stressful as I saw Blake's heartbeat drop with every contraction I had. This must have been happening for a month and he was stressed out and unhappy. I felt so emotional and bad. The doctors and nurses just about made the decision to wheel me into OR right then to perform a c-section. But my doctor came in and said we would start pitocen to see if my body could dilate and be ready for birth by morning. After they started the pictocen, Blake's heartbeat evened out and he became so much more stable. It was odd and strange but I was thankful. Guess the little guy likes drugs! However by morning, his heartbeat again was dropping thru each contraction. It was so hard on me and so stressful to hear. At 7am I asked if I could order some breakfast and they said, "no" because they would be performing a c-section in an hour! Now, anyone who knows me, knows I am TERRIFIED of surgery! I was so anxious! But more than that, I wanted my little Blake to be ok. So I took myself in hand and decided to be ok with the whole thing.

Nurses and doctors started to swirl around me and prep me for the surgery. It was so overwhelming and I kept wondering how I would make it thru. I was able to walk to the OR. Dan was placed in a small area to change into the "bunny suit" so that he could be with me during the surgery. In OR they prepped me for the Spinal to numb my bottom half. I didn't flinch at all - after all the pain of the last month, this seemed minor. I hated the numbing, tingling feeling as it spread thru my legs and up into my chest. I felt like I couldn't breath. A sheet was placed over my neck and I felt so claustrophobic with it so close to my eyes. They brought in Dan and I begged him to talk to me but he was just as distracted as I was. I heard a heart beat start dropping and immediately asked if that was my Blake, and they said no, that was my heartbeat. So strange... I felt so much pressure on my abdomen and I was so afraid they were cutting in the wrong place! It made me so panicky to know there was a knife on me. But suddenly I heard a hiccupy cry and felt my emotions surge to the fore. A little behind appeared above me over the curtain and I just burst into tears as I heard his little heartfelt cries. The doctor said, "Happy birthday little Blake! Welcome to the world." Dan went over to be with him as they weighed and washed our little bundle. I was so desperate to see what was happening, but my anesthesiologist told me everything that was happening and how they were giving him his vitamin k shot and that Dan was watching. They tell me his umbilical cord was only 4 inches in length!! That is why he was under so much stress. If I had tried to deliver him vaginally, he most likely would not have survived. That makes me catch my breath! I was suddenly so thankful we had done a c section.

They brought my baby back over and placed him on my cheek - at once I was overwhelmed with claustrophobia - the sheet in front and my baby so close I couldn't even see him! So I asked them to pull him back a bit so I could kiss him. Such a sweet little 5 pound 8 ounce bundle of joy, all swaddled and full of sweet cries. So much of what happened next is foggy and I will do my best to reconstruct the story from what Dan and I remember and what we were told happened.

A nurse came over or a doctor, I am not sure which and while I was still being sewed up, told me my baby had some interesting features. My mind wasn't registering what they meant but Dan said he knew it couldn't be good. They said he had a semi-crease, and slanted eyes and lower ears, all consistent with Trisomy 21. What?? What is that my mind was asking...The doctor is not done talking, "better known as Down Syndrome." My heart flinches and I look back and see my VERY pale husband beginning to pass out. "His sugars," I remember myself yelling, "he's diabetic!!" A nurse gives him crackers and tells him he is lucky because not just anyone eats in the OR. I remember feeling very calm like I was in the eye of the storm. Dan is crying. It's all so surreal and I am still paralyzed and lying on this hard table with my insides cut open! Calmness...acceptance...I never once questioned that he was mine and I would love him no matter what they told me.

I don't remember anything after that until I am in the recovery room. I vaguely remember being shifted to a wheeled bed and I certainly remember the recovery room. I had the doctor on my left side and the nurse on my right. My nurse suddenly looked at me so fiercely and told me, and I paraphrase, "you feel whatever you need to and don't judge any emotion you may have! This is huge and you are allowed to feel anything you need to." She was crying and I know she said more but I just hugged her. I don't know if it was peace or shock or feeling numbed over it all. Dan leans over my bed in tears and kisses me. He looks so sad. Is this happening? I never ever even considered this as part of my story! I even skipped those chapters in my pregnancy book. I figured I am healthy and still somewhat young at 34. That would never be my story. But here it is - it is mine and I have got to figure it all out.

Still I am stoic and don't cry a bit. They finally wheel me into my post-partum room. And I proceed to be sick 4 times in a row! So much and so numb physically. But I am beyond relieved that the most frightening thing, surgery, is behind me and I am in a sunlit room and not the bright sterile lights of the OR that looked like every OR I have ever seen on television.

Guests start coming and I am looking at my little Blake in shock! He is really mine - he just came out of me! It is so surreal. He must be someone else's to be so perfect and to be so mine. I only feel love for my little Taco. He gains that name as the nurses try to teach me to swaddle him - they say, "Wrap him like a burrito.." But he is too tiny to be a burrito and so he is my Taco. I love him, and I am afraid I will hurt him. He is soooo tiny and sweet. I can't get enough of staring into his beautiful little face.

The first hours are so stressful. They keep checking temperature and blood sugar and both are low. 9 times they poked him that first night and the next day they poked him an indeterminate amount of times for the many labs he will have to undergo.He is poked 4 times in each hand and each foot and they even draw blood from his head. He doesn't cry, but I do. It hurts to see my Taco as a pin cushion. Each test brings a measure of fear to my heart...can he hear? Are his kidneys ok? Is his heart all right - 1 out of every 2 Down's babies has to have heart surgery - can he see? Liver? Lungs?

His temperature wouldn't stabilize and his sugars wouldn't stabilize...such worry. They end up giving him formula and once again I am so sad. I want to be there for him and my entire birthing plan up to this point has been thrown out the window. I wanted natural the whole way but that hasn't happened and now I can't even give him the nourishment he needs. Over the course of time this abates and I am able to pump to give him my own milk...that is relief but breastfeeding is still an issue.

We had a steady flow of visitors - it was so nice to see friendly faces and talk to people and feel the love from everyone. I was able to go home a day early which was so nice! I was anxious for the normality of home and I was tired of being checked on every 15 minutes in the hospital - blood pressure checks and temperature checks... it was so tiring and I was so excited to get home to start our lives together.

Over the next few days we visit the doctor atleast once on each day. I am relieved as the tests begin coming back. His heart is healthy, his jaundice is indirect and so his liver is healthy and his hearing is perfect - actually above average! That means so much. On Friday they confirm the Trisomy 21 diagnosis and I know that is what it is supposed to be. Blake is perfect to me and I know that God made him exactly as he is supposed to be. He is my little loving earth angel and I know deep down he was given not only to Dan and me, but he was given to our families to draw them together. I keep thinking the verse, "A little child shall lead them."