The unknown

“When you walk to the edge of all the light you have and take that first step into the darkness of the unknown, you must believe that one of two things will happen. There will be something solid for you to stand upon or you will be taught to fly.” 
― Patrick Overton, The leaning tree: [poems]

Our hearts are heavy today. We had a meeting with the team caring for Finn - including general surgery, cardiothoracic surgery, neonatology, and cardiology. This got all of us on the same page but I must say that what we were being told was not totally what we were prepared to discuss.

I know Finn is sick. I know he is critically ill. I know I can't imagine not having him here.
 What I don't know is what the future holds for him.

His little body is not ready to give up, though. He is pushing through this recent insult he has had to his lungs but so many obstacles seem to be in the way for the future. His risk of NEC (necrotizing entercolitis), his esophageal surgery.... his heart.

 I continue to think back on the past and my mind scans through all of the events that have lead up to this point. I want to smile at the experience but I also want to cry. We will come out of this stronger people - it's just going to be a long road.

As we continue down this road that continues to look more and more long, we will hope for no more complications, no more infections, and continued improvement for our sweet son.  It was another one of those days. Good news will come and we are still cautiously hopeful that little Finn will survive.

Breathe in, breathe out, repeat...

“Keep your face always toward the sunshine - and shadows will fall behind you.” 
― Walt Whitman

I am not going to lie - the last couple of days have been a roller coaster. People aren't kidding when they talk about the emotions families go through in times of crisis like this.  The good thing is that we have been able to support each other and I feel as if Kyle and I are coming even closer in all of this madness.

I continue to be impressed with the NICU team at Meriter. This morning, the nurse practitioner and some of our favorite nurses worked so hard to get Finn to a "happy place" with his breathing. The NP had already been working with him since 7:00 the night before and stayed until around noon working with Finn. I was so thankful she was there and in awe of her dedication.

As for sweet Finnegan - he is finally stable!!  He is back on the regular ventilator now, which I think he likes much better than the oscillator - so do I :)  His oxygenation has slightly improved and the infection that he was brewing is under control with antibiotics.  I have a feeling his strong little body will continue to surprise us. One of the anesthesiologists said today that Finn makes his own rules. I agree!

He has gotten quite a lot of fluids and is really "puffy" but he is still a cutie in my eyes! He continues to struggle and is still very ill but we continue to look forward and hope.....that's all we can do at this point.  I will continue to keep this blog updated as he continues to improve. The night will hopefully bring nothing but good news! We could use some!
Until tomorrow....

a long road ahead

“Tears are words that need to be written.” 
― Paulo Coelho

Finn has had a rough 24 hours after surgery. He is requiring more oxygen and his little lungs are just so premature, they are having trouble ventilating him. He is still on the oscillator but is holding strong, though. I will not lose hope for him.

We will keep our heads up and keep marching forward. My hope now is that he will come through this a healthy and happy child.

I'll keep you posted. Thanks everyone for your thoughts and prayers.

Another day down...

“Courage doesn't always roar. Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.” 
― Mary Anne Radmacher

He did it again! He pulled through another surgery. I couldn't have asked for it to go better. He had to be put back on the oscillator vent and he is back on his blood pressure medications for now but they will wean him down and hopefully in a couple of days he will be back on the regular ventilator. They were able to put his bowel back together and they put in a feeding tube. They will do a procedure next week to make sure he is not leaking at the sites where they put things back where they go but other than that we wait. We will wait for a return of bowel function and once he shows that we can hopefully feed him! How exciting!

Kyle and I were so relieved to hear this news. He is still quite sick but I feel as if there is a light at the end of this tunnel. Dr. Gosain, his surgeon, was hopeful that this would be his last procedure for quite some time. We will give him time to feed and grow big and strong before his heart surgery.

Another roller coaster of a day. A big thank you to all of our Finn supporters out there. I know that your thoughts and prayers are felt by us all. I couldn't be more proud of our little boy. He has such courage.

The road out of the woods

“The world breaks every one and afterward many are strong at the broken places.” 
― Ernest Hemingway, A Farewell to Arms

It's another good morning and Finn's a week old today! Finn had a wonderful night and we have enjoyed every moment with him this morning - we are feeling at peace. He opened his eyes for us and we had a lot of snuggle time ;)

Family Photo :)

My Mom came up last week after she heard what a hard time we were having. She traded off "duty" with Adriana and has been such a huge help to us this week. From cleaning out crazy messy house to doing loads of laundry, to running errands, to providing much needed emotional support - Moms always come at the right times and we were so thankful to have her here with us....so was Bernie!

Nonni enjoying some hand holding and bonding with Mr. Finn. He loves our voices and our touch.

 Waiting for surgery wasn't as bad as I thought. It went by pretty fast. Given that he is having such a good day - our anxiety levels (although not non-existent) are much lower today. I will leave you with a hilarious name sign that hangs out of Finn's room that the nurses colored. I need 3 wishes granted today. I know what they all will be.

Cruisin' along

“Worrying is carrying tomorrow's load with today's strength- carrying two days at once. It is moving into tomorrow ahead of time. Worrying doesn't empty tomorrow of its sorrow, it empties today of its strength.” 
― Corrie ten Boom

Finn had a pretty good night. He is waking up more after his surgery on Thursday (which is great)! But he seems to be quite uncomfortable. He had a restless night so they did start him on a Fentanyl drip for his discomfort. This really helped him to be more restless and stop grimacing as much. It breaks my heart to see him cry but I know appropriate pain response is such a good thing....it means he is in there and still fighting...and his brain is working.

Not much to update today in regards to Finn. We are trying to let him rest and recover from last week's trauma as much as possible before putting him through another big surgery tomorrow. I am trying not to worry as I know he is in very capable hands and I can't do anything about it today. We will just enjoy today's quiet times and enjoy our son today.....as he is now.

Another delicious food delivery happened last night at the house. Our sweet friends Ryan and Elizabeth dropped off some delicious food. We enjoyed an amazing stew, a yummy baguette from one of my favorite bakeries (La Baguette), some fruit tarts from La Baguette and she just brought some fresh fruit, Honey Nut Cheerios (which Kyle loves) and other cereal and milk....and don't forget the flowers! We had dinner and breakfast - enough for a few days or more!

 I have never known so much kindness. I am so thankful for the group of family and friends I have here in Madison and really around the country. Phone calls, messages, gestures of kindness, and even just a note of Facebook make us feel so loved and supported. Thank you all so much.

I'll leave you with one of my favorite pictures from yesterday. I imagine what his whole face will look like. His nose and ears are a little swollen from all of the fluid and blood he has gotten but I just love his little face.
I can't wait to see it without tubes someday. He's our sweet boy. Hopes and prayers and positive thoughts going into tomorrow and Finn's next surgery. Right now it sounds like we are scheduled around 3pm. Another long day but more time for him to rest.

A good day!

“Colpo di fulmine. The thunderbolt, as Italians call it. When love strikes someone like lightning, so powerful and intense it can’t be denied. It’s beautiful and messy,
cracking a chest open and spilling their soul out for the world to see. It turns a person inside out, and there’s no going back from it. Once the thunderbolt hits, your life is
irrevocably changed.” 
― J.M. Darhower, Sempre


Just what we needed - a good day! I know this experience will have good days and bad but when we have a good day, it feels like a REALLY good one..... Finn is now off of the oscillating ventilator. This is such a relief because it made him "wiggle" constantly to give him gentle ventilation. He has graduated to a regular ventilator and it is just so much more quiet and he is able to be re-positioned and "contained" more in a fetal like position.

Kyle and I have been fortunate enough to listen in on rounds daily. This is such a good thing for us to participate in and we really feel as if we are part of Finn's care. The NICU team at Meriter hospital is beyond amazing and the nurses are so empathetic, comforting, detailed, and smart. I know when this experience is over I will be a better nurse practitioner and a better provider in general because I now know what families are going through. At Meriter, we haven't met a single person who was not friendly and helpful - and the family centered care here is so good.

That's my compliment for the day ....now back to Finn :)
They were able to turn off his epinephrine today. Hooray little Finn! Now the next step is to wean down the Dopamine and then he will be completely supporting his own blood pressure. Such a good day.  I keep dreaming of how amazing the day will be when we get to hold Finn. I think it will be one of the most special days of my life. For now, I will hold his hand and that will be my snuggle time.

It's ok to cry

“Heaven knows we need never be ashamed of our tears, for they are rain upon the blinding dust of earth, overlying our hard hearts. I was better after I had cried, than before--more sorry, more aware of my own ingratitude, more gentle.” 
― Charles Dickens, Great Expectations

I got home last night and I just felt sad. My strength was fading, I felt hopeless. This has not been my normal but after so many ups and downs, I felt as if I was beginning to be defeated.  I sat in the beautiful new glider I  got for my beautiful new baby and looked around at all of the gifts everyone had gotten me. I thought, "will he  ever wear this cute outfit? will he ever sit in this swing? Will he ever rest in this crib?" The thoughts overcame me and I had a good cry. My Mom and Kyle were really comforting and optimistic and pulled me out of my "funk". It was a hard night not knowing what the morning would bring. My strength and courage began to re emerge as I reminded myself of this experience and all of the special moments I have had with Finn, the closeness I feel to my husband and the love I have from all of my friends and family. I felt better and I felt stronger.....Then I felt hungry!

My co-workers and friends have been so generous and supportive. They coordinated a giant sign up list for people to bring food. It's funny how food is so amazing in a time of crisis. I would have never thought. The first meal was from our friends Luke and Jill (and their sweet little one, Nora). They brought an awesome spread of hot spicy cheese bread, delicious barley soup, fresh fruit and an entire cheese cake. They even sent treats for Bernie and Nora's favorite book for Finn! My heart is so full from all of these gestures. They mean so much to us, more than everyone will ever know.

Another positive of the evening was that we brought Bernie home. Our dear friends Brian and Kari had been watching him over the last week and I had not seen him in 3 weeks!  Seeing him was so refreshing and it really boosted my spirits. He's such a good boy and I'm so glad we have Bernard to keep our spirits up.

Skip to this morning......after an un-eventful night (believe me, I called....a couple times) Finn pulled through. He began weaning down his oxygen requirements and they are working on getting him off some of the medications that keep his blood pressure up. Per the surgeons, we are not out of the woods, but he has found a happy place. No leaking from the hole in his trachea is evident and he is moving his fingers and toes..... Did I mention that I love his fingers and toes? ;)

They also put Finn under a bili light to help with his jaundice. They put some sweet shades on to shield his sensitive eyes from light. I thought he was particularly cute in these....

The plan from here is to see how he does over the weekend. IF he does well with minimal issues, they will take him back to the operating room Monday to put his bowel back together, put a scope and look in his esophagus, and put a feeding tube directly into his stomach. We definitely aren't out of the woods yet but maybe we are sitting by a sparkling spring in the woods enjoying the peaceful sway of the trees.

The "big day"

“Hope is the thing with feathers 
That perches in the soul 
And sings the tune without the words 
And never stops at all.” 
― Emily Dickinson

Here we are, back again. I think Finn's style is to surprise us daily and cause a lot of production of gray hair.

Little Finn had a great afternoon. We were so optimistic that he was going to do really well in the operating room for what we were hoping would be a big surgery to correct a lot of big problems.
We were a little lofty with this one I guess.

Finn left his room at 2pm and the surgeons told us it would be at least a 4 hour case. They arrived back to our room at 4pm.  They started off the procedure with Finn on his side so they could get to the fistula in his trachea best. They were able to clip off the fistula but when the started trying to close the hole in his trachea, the tissue there was as thin as tissue paper. It just wouldn't hold a stitch. Finn did his usual of scaring the entire operating room, dropped his oxygen levels, and heart rate. This was not as severe as Tuesday's operation, thank God...but it was a scary time.

The anesthesiologist said that he was on his side and when they turned him to his back it was either life or death if he leaked. Once they turned him, he looked awesome. No leaking from the hole in his trachea..... yet. They will give him through the next 24 to 48 hours (ish). This is the amount of time they would anticipate it  would take for the hole to close over. If it starts leaking, there is not a lot more surgically they can do. He could quite possibly, once again, not survive the next few days.  If he does survive, we will plan another operation Monday to put his bowel back together.

 I am not even sure what to think. I just know I am afraid for my son and we are emotionally exhausted from this roller coaster. The good thing is that he is stable, he is strong, and everyone here says he is a fighter. I have to agree with them all. Keep fighting Finn, we can't lose you now. We love you so, so much.

Day 2 of life

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.” 
― Shel Silverstein

It was a good day today. Finn surprised everyone, including the entire medical team. He needed less oxygen throughout the day and started wiggling his fingers and toes! Kyle and I held his hand on and off throughout the day and it felt so good to see him somewhat responsive.

His heart took a bit of a "hit" yesterday. It improved on this morning's echo but cardiology was thinking it would be safest for Finn to wait one more day for him to return to surgery to put back together what was taken apart yesterday.

I will say that the "ups" really are ups and the "downs" hit rock bottom in this experience. Our hopes are high today. We are preparing ourselves for a big day tomorrow pending another echo in the morning that looks favorable. Please have Finn in your close thoughts, prayers, good karma sending,  etc tomorrow as he endures another operation.
There is no doubt that he will continue to fight. Thanks to everyone for your ongoing support. Until tomorrow....

1st day of life

I've always been told that Preemies are their own entity - that they are so resilient. Finn has proven that time and again already in his first day of life.....what an entrance he's made.
Although he had an APGAR of 7, he was working hard to breathe once he arrived at the NICU they did place a breathing tube. We finally got to see him after about 4 hours. I will admit that it was shocking to see him at first, given his size, but I still thought he was the cutest baby I have ever seen.

Here comes the complicated part:  I always like to start with the good news-
 #1: The echo that they did when he was born actually showed promising results. Finn's left ventricle was much more developed than they originally thought so he does not have a diagnosis of hypoplastic left heart syndrome!
#2:  They thought the transverse arch of the aorta looked as if it was developing and should be ok without intervention but they will continue to watch it. He for sure has a coarctation of his aorta and will need repair. The big question is: will he need open heart surgery or a "simple" incision under the ribs - only time will tell.

Here is the bad news - the news that ruined our next 2 days....
The nurse practitioners in the NICU really impress me. Being a nurse practitioner myself, I enjoy working with them and they are so good at explaining everything. The "saga" started with the NP telling us they saw "a few things" on Finn's chest x ray that looked curious. They had trouble passing an OG tube during the original admission. Something in his esophagus was blocking it from going through.
They also saw a few vertebrae in his thoracic spine that they called "hemi-vertebrae". They weren't sure what to make of that either. They did have a name for this grouping of findings, however. They called it VATER association. This is not like a syndrome, but a grouping of problems babies can be born with that sometimes go together...although they do not have to have all of the findings to have the diagnosis. I'll let you read up on it as you like;
http://www.cincinnatichildrens.org/health/v/vacterl/

The findings Finn as are the cardiac, vertebral, and tracheo-esophageal. He does not have the other associations that could be a part of the problem - which is good.

Needless to say, he bought himself a surgery consult. The surgeons wanted to take him to the operating room to both look at his trachea to see if there was a fistula given he was difficult to ventilate and his esophagus to possibly diagnose esophageal atresia. There were a lot of unknowns. There was a lot of fear on our end as parents too - transporting a 2 pound baby to the operating room, doing a procedure on a 2 pound baby, keeping a 2 pound baby warm. *sigh* such a complex situation becoming more an more overwhelming.

Finn left for the OR around 1:00pm. We went downstairs so I could get discharged from the hospital, ate lunch, then realized that hours had gone by. It was now around 4pm and we had not heard any news. Finally, the neonatologist came in and told us what happened.

Apparently when Finn was in the operating room, everyone's worst nightmare happened. Long story short, his belly began to fill up with air, he became difficult to ventilate, perforated his small bowel, dropped his heart rate and oxygen levels, and they had to do CPR on my sweet baby. They ended up having to do what we call "disaster control" and took out part of his small bowel where it had a little hole in it, tied off the fistula so air was no longer going into his belly, put in a chest tube for a pneumothorax, and I think that's "about it."  The neonatologist was quite concerned that he was not going to make it through the night and that he may have a lot of neurological insults give what happened to him in the operating room and that he was low on oxygen for so long.

Shock. The only word I can think of to describe what I felt. I couldn't process words, questions, information...anything. All I could do was cry and think that this just happened to my son. I thank God that our sister - in - law Adriana was here for us during this time. I don't know what we would have done without her. She was so calm and, although tearful at times like the rest of us, was able to process the information and ask the questions that we just could not ask during this hard time. We love her so much and she was able to be here for us at the perfect time....and she's a physician so she could ask some pretty awesome questions :)

We waited and waited and waited and finally it was time for Finn to come back. The team who saved his life - seriously - all looked shocked. I work with so many of the MDs and respiratory therapists and anesthesiologists that were a part of this team and I am so happy to know they were there with Finn. I think everyone was traumatized.

He came back and I remember seeing him thinking I have never seen a baby look this way.He had so much blood, so many tubes, so many issues. I have taken care of ICU patients but they were adults and I remember thinking that an adult would have such a hard time pulling through or even surviving an insult such as this. My heart was so heavy and the crying was not stopping. I was a hot mess.

The surgeons said they want to take him to the operating room again tomorrow and fix what they had started. His heart took quite a hit but if he survived the night, they would do an echo in the morning and see if he would tolerate a big operation.

We went home that night knowing that if he did make it through that tomorrow would be a hard day. It was hard to leave but we only live 10 minutes away and I would call them to check in.

As the night went on, I continued to call. Every call I made they said things were getting better. His oxygen requirements were going down and he was doing well!  He shocked us and the medical team on how well he pulled through this and his brain ultrasound showed that he had no bleeding in his brain - which they called a "miracle". words don't describe how proud of my son I am for fighting so hard. Such a strong little miracle.
 We aren't out of the woods yet, though.....stay tuned.


  

The Roller Coaster

So a few things have happened since my last blog post......
on 2/16/13 I was having a great day. I remember telling my nurse how good I felt and that I had not felt that good in a long time. It's funny how there are, so many times, a calm before the storm.

Saturday late afternoon my water completely broke. I had a moment of great fear and anxiety and was reassured by the nurses and doctors that I would have "fluctuations".  The back of my mind knew this was no "fluctuation" but I did try to get some rest. Kyle luckily had planned to spend the night every Saturday night with me. I went to bed and around midnight began having contractions. There was really not much of a doubt that these were contractions. They hooked me up to the monitor and sweet baby was decelerating with the contractions given the amount of fluid I had lost.  Needless to say, I got an IV, was transferred to the L&D unit and....you guessed it.....another bolus and infusion of the dreaded magnesium.

I will say that this round of magnesium was not as bad because the contractions hurt so much I didn't really notice. The doctors kept saying that maybe it would stop the labor but if baby wants to come, he will come with or without the magnesium's help.

The magnesium did work for a while and slowed my contractions down to one about every 30 minutes. I made it through Sunday contracting off and on and then Sunday night they began to pick up to every 7-10 minutes....that bought me an increase in the dose of magnesium, which did help.

 I don't think anyone wanted to tell me that Mr. Stacey was coming and there was nothing I could do about it. I was trying to stay optimistic but my mind knew better and put me into survival mode. I knew I would deliver a baby soon. All I could think was to get me through the next 10 hours so I did not deliver my premature child with a known heart condition in the middle of the night. I am so thankful that I made it through the next 10 hours - although painful - for his safety and well being.

7:00am. The OB Came in to see where we were with things. She decided to check things out. I remember it didn't take long. She checked quickly, then came to the bedside to tell Kyle and I that I was fully dilated and they could, "see the head".
Fear, panic, sadness, anxiety and, admittedly, guilt overcame me. I knew what she was going to say but it felt like the words hurt so bad to hear.  We cried and then we stepped up. We knew what we had to do.  As a side note, my OB who has been with me through this experience came rushing in. She was not on call. She came to be there for me and deliver our baby. I was so happy to see Dr. Schmehil. I could have never asked for a better group of doctors at Associated Physicians. So supportive and so good.

I remember there were no less than 20 people in the delivery room while I was "doing my thing". Modesty is now lost! I was so glad the whole team was there. I was so weak from the Magnesium increased dose I don't know how it happened but I pushed for an hour and a half and welcomed Finnegan Andrew Stacey into the world on 2/18/13 at 10:18am. He weighed 2 pounds and 12 ounces and was 15 1/2 inches long.
I saw him briefly, in a blur....then he was taken by the NICU team.

There was such a calming feeling in the room. There were no raised voices, I did not sense anxiety or fear in the team as they resuscitated Finn. I was listening to see if I could hear it.... and I heard a cry. Be still my heart. I cannot explain the love we both  have for this strong, brave, loved little boy.

Day 10!!!

"Remember, today is the tomorrow you worried about yesterday."
- Dale Carnegie

Day 10 almost down! Keeping up with my daily plan of activities and so far keeping my sanity. I do enjoy coming back to this blog daily and sharing my day and archiving the memories I am making with some good friends.

I'll start with a new friend - Ty, the 3 year old Cockapoo paid me a visit today. We had a personal moment. :) I just love these furry visitors - they really make my day and they are so calm and sweet! I hope Bernie doesn't think I"m cheating on him with these other dogs..... I miss my Bernie so very much!

snuggle session with Ty

Another highlight of my day was my good friend Allie's visit. I always look forward to visitors. She came with a surprise bag and it was actually a gift from Allie and 2 of my dear co-workers and friends, Kelly and Kim! What a surprise it was, too - it was a Shellac manicure set!!!! I was so surprised to get this and couldn't wait to get started on my old tired nails!

I wish Kim and Kelly could have taken part in this momentous occasion!

We ate lunch, snacked on treats and shellac'd our tired nails throughout the afternoon. It was "sensationail" and such a sweet gift.

After exploring music today, I came back to my favorite artist, Ingrid Michaelson. I love her folksy tone and can't get enough of her songs! I stumbled across a similar artists who actually sings along with Ingrid. Her name is Allie Moss. I enjoyed one of her songs today called, "Corner" and I thought I would share her lovely voice with the rest of you. She's not necessarily a "band" but I enjoyed exploring her work today!





Looking forward to seeing Kyle tonight and just to hang out with him. It's been an eventful week but the positive part is that it has gone by so fast! 29 weeks next Tuesday! I think the further we go, the more likely we are to make it to 36 weeks, God willing.
Until tomorrow...

Day 9

“You know you're in love when you can't fall asleep because reality is finally better than your dreams.” 
― Dr. Seuss

Happy Valentine's Day! I need to start out by bragging on my husband for getting me the most beautiful bouquet of roses I have ever seen. Needless to say I got a lot of, "oohs and ahhs" from the staff around here. What a lucky girl I am!                                                                                                                     I am bummed because I did not take pictures with my last 3 visitors. I even have a note on my board to remind me to do this! It's very important to me to remember each and every person to come through these doors and see me. I won't forget them without a picture but it is very fun to have an archive. :)    

My sweet friend Athanasia and her husband Matt came by last night and brought dinner for me and Kyle. Even being 10 months pregnant, she made pork tenderloin, roasted potatoes and a delicious salad! Impressive :) She also brought me a bedrest survival gift as well as a little something for Mr. Stacey, which included my favorite swaddling blankets - ever....they are made of bamboo and super soft! The gifts came in the cutest basket I have ever seen.  We had a little hospital room double date - very romantic :)

Little outfit, swaddlers, butt balm, and a bag for wet things :) Perfect gift!

 Today was also full of fun things, from glucose tolerance tests to shots of Rhogam in the butt to more visits from supportive people. I will snap a picture with them next time they all come so beware!
Gretchen came and brought me some yummy healthy snacks as well as the complete season of the West Wing! I have not seen it and I am really excited to start this one.

Me having a personal moment with the West Wing Series

  After my glucose test, I was starving! Thank goodness my friend Nancy was to the rescue! She made some home made tomato soup as well as brought me a sandwich from one of my favorite places, Barriques! I may or may not have eaten a LOT of food.  After that delicious lunch, I had to lie down and make some room. With this growing tummy, not a whole lot of food fits in at once....sooo worth is, though.

Another day went by quickly and another day filled with sweet, supportive friends.  Mr. Stacey is so loved :)                                                                    

American Family Children's Hospital: Remarkable

I love this. The man at the very end is  Mr. Stacey's Surgeon and his cardiologist is in this video, too! SO thankful to live in Madison WI.

CHD awareness week!!

One of my friends brought to my attention that this week is congenital heart disease week.  I had no idea how common it is in newborns until I began my own research...

A few facts from the Children's Heart Foundation:

• Congenital heart defects are America’s and every country’s #1 birth defect. 
• Nearly one of every 100 babies is born with a CHD.
• Congenital heart defects are the #1 cause of birth defect related deaths.
• Congenital heart defects are the leading cause of all infant deaths in the United States.
• Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood.
• Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood.
• More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
• There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
• In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.

This campaign has obviously become very near and dear to my heart. If you are interested in donating or would like to learn more about how to help this important research, please visit: 

http://www.tchin.org/aware/

I know I will! :)

Day 8: A new band, a growth scan, a baby shower, and lessons learned

"Challenges are what make life interesting; overcoming them is what makes life meaningful." - Mark Twain

I'm still here and Mr. Stacey is still in my belly. It's a good day :)  It's funny that even while on bedrest, so many great things can happen in a day. Last night, some dear friends from work came to throw me a true "Southern Lady" baby shower. My parents brought the unwrapped gifts from my Arkansas Shower and we took pictures and watched me open the gifts.

 You all may know that I missed my baby shower that was to be in Arkansas last weekend and I was quite sad about it. The Wisconsin ladies thought it appropriate to wear Southern Hats, pearls, and eat BBQ in the spirit of what they thought may be what we Southern ladies do at a shower! Ha! It was one of the sweetest things anyone has ever done for me. Such good friends I have!

The ladies :)

I also had a visit from my friend Kelly. She brought me a knitting loom and some sweet treats :)  Perfect gift!

Although my friends and family from far away couldn't be here to celebrate with me, I felt their kindness. Lindsay, one of my best friends, was one of the hostesses of the baby shower I did not get to attend.. She made an awesome diaper wreath that I can't wait to hang up in the nursery and also spoiled Mr. Stacey with a huge basket full of gifts! Among Lindsays gifts were countless others from friends and family; including, gifts from my cousins Angel and Sabrina who were also part of the team to put on my baby shower. Ugh, gotta admit I am sad I missed that shower!!!!

Today I had my 28 week growth scan. I don't get nervous with scans or ultrasounds anymore, which is a good thing. I accept that whatever they find will be out of my control.  Luckily today was in my favor. Mr. Stacey weighed in at a healthy 2 pounds, 5 ounces! He had plenty of fluid surrounding him and was happy as a little clam in there. He yawned and waved and showed off a little for me today. I couldn't stop staring at his sweet face....

The hard part of my day was seeing my parents off (until next month) to Arkansas.
Their visit made me realize that, holy cow, I'm about to be a parent! I saw this week how selfless we are toward our children and we really will do anything for them. My Mom showed me her unconditional love and I will never forget this time I spent with her. She was here for me during the most difficult time of my life and will continue to be supportive.
 I couldn't be happier to have such a sweet Mom. I learn lessons from her every day and hope to be the strong and encouraging Mother that she has been for me.

One of the goals I have set myself to pass the time is to listen to a new band at least every other day.

Kyle recommended a couple of blogs for me to explore. One being: www.myoldkentuckyblog.com to get me started on this endeavor. I have had some good luck so far! The band I explored today is called HAIM. It is a group composed of 3 sisters who have been working hard for their band since 2005. The song I couldn't stop listening to was called: "Falling". It was inspirational, uplifting, and I like the beat....not to mention it is an all girl band - which I Like :)
 The song "falling" reminded me to never give up. Here is a link to the blog to listen to it.
http://www.myoldkentuckyblog.com/?p=38530
I do have this song now on my itunes, however, I haven't quite figured out how to get it on the blog. For now, follow the link. I will put "how to put itunes songs on blog" on my "to do" for tomorrow :)

See you tomorrow!

Day 7!! Furry Friends and 28 weeks!

Finish each day and be done with it. You have done what you could. Some blunders and absurdities no doubt crept in; forget them as soon as you can. Tomorrow is a new day; begin it well and serenely and with too high a spirit to be encumbered with your old nonsense.   Emerson, Ralph Waldo


Yep, a new milestone today. Each day is a gift and today marks my 28th week of pregnancy and my 1st week down in this hospital!

Mr. Stacey is hard at work growing

Those of you who know me are quite aware of my love for dogs. They have a nice service dog program here and I have had the opportunity to have 2 furry friends visit!

Sweet Carson. He's an old man. 8 years old! Made my day :)

I was so excited to meet Raider. Looks like I'm about to choke the poor dog.

Good day. More to come.
Tomorrow will be a day where I explore a new band. I will let you know what I find. One day at a time.

A note on friends and family....

“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.” 
― Henri J.M. Nouwen, The Road to Daybreak: A Spiritual Journey

When I think of the overwhelming support I have gotten from family and friends, the toxic levels of progesterone in my body begin to bring big tears to my eyes! From fragrant flowers, to home cooked meals, to activities to pass the time, to visitors and phone calls - the list goes on and on....

 I am so thankful to have the sweetest, most supportive group of friends and family a girl can ask for. This is the hardest test of my life and I couldn't make it through without everyone near and far. 

 I can't begin to thank everyone enough and I don't know how I'll ever repay each of them. I will find a way, though. :)

Sweet Kristin and her delicious pot pie :)

Ann and I. She brought some great DVDs to pass the time

Cookies from Cecily....YUM!

The new room

After a couple days that I don't remember down on the labor and delivery unit, they moved me to the "ante partum". My home away from home.

Luckily, my Mom was here to keep me company so Kyle could tend to Bernie and go back to work. We had a hard 1st night full of tears and apprehension but with her help, began to develop my new daily routine.

Mama makes everything better

The nurses here have already been so wonderful. We made one daily goal for ourselves:

More to come from Meriter Hospital, AKA: my new home for hopefully the next 6-8 weeks!

Magnesium? say what?

Magnesium. A harmless mineral, right? Luckily I wasn't dilated when I came to the hospital but I was having some contractions. Magnesium is a very proven drug to both stop contractions and also has some neuro protective properties for little babies that want to come out early.

They said, "oh we are just going to give you some Magnesium to stop labor". "We will give you a bolus over 20 minutes then you will be on it for 48 hours. You may feel flushed and a little like you have the flu while you're on it".  Ok, no problem I thought.  Ha!!  

Magnesium infusions are now my worst nightmare! I thought I was on fire during the bolus and the next 2 days were a bit of a blur. I felt like I had the flu, I was really only able to get up to a toilet apparatus at the bedside with 2 people helping and I felt as if I was really intoxicated but not in a good way. My fine motor skills were gone and, needless to say, it was hilarious to watch me eat my morning yogurt. 

Kyle was there the whole time and didn't leave my side. Such a strong man. He was with me for whatever I needed. I have to admit that this was not our most romantic experience but I love him more than I ever have.....plus he is still with me after seeing me in some awful hospital issued mesh underwear that are less than attractive :)....

The second part of this experience was betamethasone. A steroid shot right in the butt. YOUCH! This was so important for baby's lungs in case he did decide today was the day....luckily he didn't. We had a 48 hour window to wait. The statistics were that usually babies are born within 48 hours after PPROM - not our baby! Keep going. Day one down..... Hopefully about 70 more to go.

Put in the knife and twist....

Bernie and I hanging out together

Life continues on. We were beginning to be more at peace with the news of Mr. Stacey's heart and our excitement of his arrival was picking up again......until Tuesday, February 5th 2013.

Monday night was a restless one. I was feeling uncomfortable all night and just didn't feel like myself. I remember noting some "drainage" (TMI, I know) that was very uncharacteristic of me. I woke up that morning with a strange, almost nauseated feeling and I just felt off. I thought it was just lack of sleep. 

My dear friends and cousins from Arkansas were hard at work planning my baby shower in 3 days so I thought maybe I should call my OB to get my symptoms checked out. I didn't want to travel a long way if something was wrong.

Of course I was in denial about my symptoms. Nurses are the worst patients, I think. I called my OB that morning and, in the spirit of my denial, took the latest appointment they had. I went in at 1:45 thinking they would blow me off as another nervous Nelly pregnant lady. I was wrong.

Turns out I developed what's called, "premature rupture of membranes". Pretty much, my water broke at 26 weeks and 6 days.  I remember my OB becoming tearful having to tell me this. Given the heart concerns and now the threat of prematurity, things were beginning to look so grim. I cried. I cried so much.. I was grieving for my son and I felt so out of control.. She said, "Amy - you aren't going to Arkansas. You have to go straight to the hospital".

 No baby shower. No Arkansas trip. No more work. No more Bernie. No more nursery decorating. No more Saturday errands with my sweet husband.....for a few months. I was going to the hospital. I was going on bed rest. I was so very afraid. 

My goals and priorities suddenly changed and nothing else mattered. My love for this little boy grew and grew and at that point I was willing to do anything to keep him from coming out early.....

Broken Heart

12/18/2012: The big day where we found out that we were having a BOY! The little guy was so active that they were unable to get a good picture of his heart. They asked me to come back the day after Christmas and I was happy to do that since it meant I would get to see him again.

"Mr. Stacey" at 20 weeks - completely smitten with this boy

I came back for the heart check the day after Christmas. I remember how it took the perinatologist a LONG time to look at little boy's heart. I remember wondering why it was taking so long and what they were thinking. After about an hour, the perinatologist said to me, "don't worry but it looks like something is wrong with your baby's heart. the right ventricle looks too big. It could be 200 different things but the best thing to do is have the cardiologist look at it". The hilarity of that statement still makes me laugh. I mean, don't worry? Seriously?!

 I remember calling Kyle and not being able to speak words because they just came out as sounds of crying. After calming down, I let him know that we had an appointment with a cardiologist the next day. I was so thankful we were able to see someone soon but that night was one of the longest nights of our lives....

The day of the cardiologist appointment was full of anxiety as the appointment was not until 3:30 in the afternoon.  The echo was a long test and I remember taking a lot of deep breaths to try to calm myself. We had such hopes that this was nothing at all and we could resume the normal pregnancy I was having.  After about an hour of chasing our sweet active baby around, the verdict was out.....

The cardiologist sat us down and came in with a lot of pictures. We knew this can't be good. Turns out our sweet boy really does have a broken heart. All of our hearts were broken that day.

In summary: the right ventricle is actually a normal size - it's the left ventricle that looked too small and made the right ventricle look too big. There was (and still is) concern for hypoplastic left heart syndrome. This is a for sure ticket to open heart surgery at birth and a number of additional surgeries. Here is a link to an informative website about it should you be interested in using the Google machine for this problem:
http://www.childrenshospital.org/az/Site502/mainpageS502P0.html
 The little guy also had for sure what is called a coarctation of the aorta. The third concern was the top of the "candy cane" of his aorta. This was narrow as well. http://www.childrenshospital.org/az/Site520/mainpageS520P0.html

Why is this happening? What did I do wrong? I was so angry when we heard this news. I was angry at myself, angry at Moms with children that did not have heart problems, angry at something bigger than myself that I couldn't quite get a handle on. I tried so hard to be a healthy pregnant lady. I was exercising, eating right, controlling my stress. I went through all of the stages of grief and after a few days that anger turned into acceptance as I knew it would. We met with a genetic counselor who pretty much told us this is nothing that we did, nothing hereditary, and nothing we could have prevented. There is no known cause for most congenital heart defects. They just happen.

Needless to say, we had a few problems on our hands. I was amazed they could even see these "defects" in a 20 week old fetus and I was also thankful they found this problem this early. Good thing is that every other part of our little man was more than perfect from his brain to his toes. It is just this "little road bump" we could deal with together. A strong, positive couple we are and a strong, positive couple we will continue to be.

How it started.....

8/26/2012: This was the day our lives were about to be different. I was going about my business and decided to take a pregnancy test. I remember a sort of denial that I was pregnant but something told me to go ahead and take a test because what if I was? What if it was really happening?!
I took the test, put it down, cleaned the bathroom a little did a couple things, then came back to it.....I stared at the test.....did a double take.....stared at it again......then a rush of emotions, such as excitement, fear, anticipation and anything else a human can possibly feel came over me when I realized the test was POSITIVE!

Yosemite Vacation May 2012

I ran into the other room, hugged Kyle as he shared in the excitement, and began to plan the addition to our family. We couldn't have been happier!

The days and months to come were full of excitement - telling our parents, friends, family and co-workers! I was enjoying every minute of my pregnancy and in awe of how my belly was growing!