Time to heal

“Our wounds are often the openings into the best and most beautiful part of us.” 
― David Richo

First day without Finn. We feel an empty void that will never be replaced. I can't bring myself to open the nursery door and look at all his sweet things yet. I know that will get easier. We are trying to keep ourselves busy and will have many of our family members visit us soon. We are looking forward to some much needed family time. Kyle's Mom has been such a support for us through this time as she has been in Madison with us. We were so glad she was here last night as a shoulder to cry on and she has been such an enormous help to us. So thankful.

We've had a lot of people ask what they can do for our family during this time. We've been thinking that the best thing would be to help medical research for babies and children with congenital heart disease as this was what we had known Finn had at 20 weeks. Knowing he had a heart problem was the first part of this journey and it hits close to home for us.
  CHD is one of the leading congenital problems in babies (close to 1 in 100) - Finn's poor little heart added a level of complexity to his life and medical care that was ultimately devastating.

 If you want to help, we would love for you to donate in Finnegan's name to the Children's Heart Foundation: http://www.childrensheartfoundation.org/donate-now  Your donations would go toward research that specifically targets congenital heart disease.

A donation would mean the world to us and we would love to have our son recognized for his strength and fight during his short time here.

Thank you again to everyone for their support.

Special moment with our sweet Finny

Sad News

“Only people who are capable of loving strongly can also suffer great sorrow, but this same necessity of loving serves to counteract their grief and heals them.” 
― Leo Tolstoy

It is always surprising to me how fast things change - in the blink of an eye.
The roller coaster that has been our lives for exactly one month today has come to an end. After such good news this morning, Kyle and I went home to have some lunch and wait out a big snowstorm that was coming down on Madison today.
I got a call from one of our favorite nurses around 5:30pm. She said Finn's lungs had both completely collapsed after his bronch, he had not urinated for 18 hours, he was needing more blood pressure support and they were getting a stat echo. She said we should come to the hospital.

We dropped everything and drove in the 7 inches of snow to the hospital. The fear and anxiety in both of us was palpable - we knew what we were walking into but it just hurt to think about.

When we got there, we were greeted by 2 of the neonatologists that have taken care of Finn. The nurses and nurse practitioner were working on Finn and they all had such a sad look on their faces. After talking to the doctors and thinking about everything Finn has been through and what he faces in the future - we made one of the most difficult decisions of our lives. We decided that he did not need to suffer any more. Finn was telling us he was ready and he was tired.

Finnegan passed away on March 5, 2013 a little over 2 weeks old. The sadness we have felt is so overwhelming that it hurts our hearts. I cannot describe our grief but I can say that we are at peace knowing Finn is in a better place now and he will not suffer any longer.

We know this was not an easy night for just us. The NICU team, anesthesiologists and surgeons who worked tirelessly to save Finn's life were grieving as well. I just have to say that we are so thankful for their skills and knowledge. Without them, we would not have been able to spend the past 2 weeks and live some special moments with our sweet son.

Thanks to everyone who has sent up prayers, well wishes, good karma, happy thoughts, etc and to everyone who has sent cards and been so generous with bringing food. It for sure helped make this beautiful experience somewhat easier.

 Our son, the fighter. He will always be remembered in our hearts and we will think about him every day for the rest of our lives.

The calm after the storm

“Be faithful in small things because it is in them that your strength lies.” 
― Mother Teresa


Finn, Finn, Finn. He is the strongest little thing I have ever seen. I don't know if Kyle and I have ever experienced so many emotions at one time. It is truly exhausting.
He did so well with the bronch that the doctors came back smiling. They were able to suck out a giant mucous plug in his left main bronchus that is now hopefully going to allow him to breathe better. I have no idea how he does it but little Finn has the drive of no baby I have ever seen (I may be a little bias).

Before the procedure - because we did not know what the end would bring - the nurses allowed us to pick Finn up and hold him. I could not stop kissing his little swollen head and holding his little swollen hand. I knew it would be but it was one of the most emotional and special times of my life. I will never forget it.

He still has a long way to go but we will take today's  news and hold onto it as long as we can. One day at a time....he is our little miracle.

*sigh*

When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.
Harriet Beecher Stowe 


Here we are again - the saga continues.  Finn has had a difficult last couple of days. He has a completely collapsed left lung full of mucous. He is now on the highest amount of oxygen he can be on and his oxygen saturations are marginal. They tried to break up the mucous with medications that have, so far, been ineffective. As an almost last effort to help Finn, the surgeons will try to bronch Finn (put a camera down to look into his lungs and wash out the mucous plug). This procedure comes with many risks. Finn is so swollen at this point that they are afraid they will not be able to get his breathing tube out, put a camera in, then put another breathing tube back in. If Finn loses his airway, he loses his fight to be in this world. I can hardly think of it.

Kyle and I are continuing to stay positive. We are optimistic that tomorrow's procedure will be successful. The surgeons who are working with him are so skilled and they have already saved his life multiple times. We are so happy to have such an experienced medical team on Finn's side.

Tomorrow at 8am is the time for this procedure. Hoping for the best and continuing our cautious optimism that tomorrow will bring a good outcome for our sweet Finnegan Andrew. The battle seems to be moving more uphill but we will continue to fight for him.

The nurses did arts and crafts with Finn last night. His color is a little off from the camera but I still love this keepsake.

Grow baby, grow

“There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle.” 
― Albert Einstein

Here we are again. Having trouble with the ventilator. Little Finn is having a bit of a rough morning but the Doctors are quite optimistic that once we get over this hump he will be able to be left alone again and continue to grow. We continue to be optimistic he will, once again, persevere.

This weekend, Uncle Heath came to visit. He has been such a help with keeping us distracted, keeping us laughing, and keeping our heads on straight (mostly my head). It is difficult being in the medical field and not paying attention to every detail of Finn's care. After a day like yesterday, I have learned that it will cause me to go insane. Kyle said it best when he told me that I am not a nurse right now, I am a Mom. That brought me a good prospective and I have been trying not to dive into every detail....it makes the ups and downs so much more severe when I do.  I tried a new angle last night and just let go a little bit from my control-freak tendencies and let the nurses call me if there was a problem. I slept so much better that way. It takes a lot for me to do this but it did work. Kyle and Heath were right :)

We continue to have food delivered to our house from our friends and family. It continues to be a helpful relief than having to worry about what to eat. We have gotten everything from Chili by Kari, beans and ham by Ann,lasagna by Vanessa, Mac and Cheese from Neil, and a whole roasted chicken from Deb! I am 100% sure the food we have frozen will be a huge help when Finn comes home and in the months to come. Couldn't be happier with everyone's generosity (and Bernie likes to try and sample all of the cuisine as well).

Kyle's Mom will be coming up today and staying with us through the week. We are looking forward to seeing her. As the neonatologist- Dr. Pillars- said today, "it is time for Finn to get better". I agree.

Encouraged

“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” 
― Lao Tzu

Little Finn is holding his own today. He has been able to sleep almost all day and has had very little stimulation - which he needs in order for his brain to develop and to decrease stress. I had the best morning. The nurse let me pick him up while she changed the linens in his isolette (and she included a stylish bamboo number I brought that smells like me :) ) . I was beyond excited to do this! He had his eyes open and we just looked at each other for a while. I'm not sure what he can see but he does know my voice and looks toward me when I speak. My heart just melts.

Our plan is to continue making the most of each day we have with Finn. We do not know what his future holds but we have so many special moments with him now. I love staring at his perfect face and  will just keep reading him his books and loving him.  Kyle and I read so many things about preemies and there are many studies that show better outcomes when both parents are involved with their preemie. We will hold onto that and keep our chins up knowing we are doing what we can for him.

I heard a song today on the way to the hospital that brought tears to my eyes -  it was so appropriate for our current situation: it is an older song by Sara Bareilles called, "The Light". Part of the lyrics say:

Nevermind what I knew
Nothing seems to matter now
Who I was without you
I can do without.

No one knows where it ends
How it may come tumbling down -
but I'm here with you now. I'm with you now

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.