40 days

Looking back now 40 days in a lifetime is nothing but then each day felt like a lifetime.

Wednesday, December 29th 1:58am - The most beautiful baby Colton Walter Witschey is born! The next couple of days go great. He will be going home once he gets his Billy Ruben (Jaundice) numbers down. Most likely Monday.

Friday night. New Year’s Eve - Colton is doing great. We are going home Monday. I am discharged. I go home (against my will) to shower and regroup. Then we are back at the hospital before the ball drops. At midnight A.J. and I are changing Colton’s diaper in his egg crate (see picture below). What a great way to ring in the New Year - our first full year of parenthood! Because I am a breastfeeding mom I get to stay in the family area all night. It is sleep room near but kind of separated from the NICU.

Colton's egg crate

8am on the first day of the New Year – 2011 – I wake up for some strange reason and leave the parent sleep spaces in the Hartford NICU. I stand beside Colton’s bedside and his blood pressure and oxygen levels drop and pulse increases. His nurse is nowhere to be found but our favorite nurse, Stephanie (she herself is 10 weeks pregnant but not telling anyone), is right across the room. I go ask her who his nurse is and she goes looking.

Because Colton’s heart is acting so abnormal we are headed to Boston. The on-call cardiologist can see much change in the echo cardiograph (heart ultrasound) from the prior day but is still not sure the change is the main cause of what is happening. Blood is drawn to check for infections but results can take up to 4 to 7 days.

We are going to Boston for Colton to possibly have heart surgery that day. What. No we are going home Monday. This is backwards. This is not right. I go into the hall to call A.J. he needs to be here. Once I am able to reach him and the family is on their way, I go back in. They have already spoke to Boston they have an open space for him on their cardiac floor. As they are prepping him for the transport to Boston I do not know what to do with myself. I try to get a grip on reality and try to take control of the things I can but I didn’t. All I remember is sitting in the waiting area wanting nothing more than to be back in the room with him, looking at him, holding his little hands, touching him. Like yesterday. I want yesterday back. I know that I can wish and want all I want but what is – is that Colton is going to Boston. So up we all go.  Not in an ambulance but in a cardiac bus (see picture).

I was able to ride in the front and watch a video feed all the way up. A.J. and Andy rode in our Ford, my mom and dad followed in their vehicle and A.J.’s mom caught up with us half-ish way up. When we get there I go up with Colton to his CICU room 24.

 There are rooms everywhere. Open bays and glass (fish tank) rooms. I can see 3 nurse stations. After seeing his room I am shown into the family waiting room so the doctors can look him over and get a plan. Once they assess him A.J. and I go back to see him and get the Colton plan. The doctors did not want him to go into surgery since he was so small. They like to want until they are at least 5 or 6 months to help with healing since they will be bigger.

After a week in CICU we are transferred to 8 East on Friday, January 7th. 8 East is the step down floor. Parents are more in control what goes on with diaper changing and feeding. No one had to tell us to go, we were ready. We were ready to hold and hug and cuddle. Because he had a breathing tube in until the 4th we were not allowed to hold or feed our baby much. But now as long as the wires stay attached we can hold him when we want. First we are in room 824 but after just 2 days on January 9th we are moved into 834 because the hospital was working on remodeling.

After a few good days and finding out he would not be going home for a long while – possibly not until after his surgery at 5 or 6 months – I start to ask about his transfer back to Hartford CCMC. The day before his transfer (January 11th) he started to have Tet spells. Tet spells are when blood that should be going into your lungs to get oxygenated goes to your body. So your oxygenation levels that should be 95-100% drop. He would turn blue. A purple blue. A very scary color for a baby. Well a very scary color for a daddy and momma to see their baby turn.

January 12th his Tet spells started to get worse. I asked what he would be traveling back to Hartford in and when the ‘umm’ doctor said an ambulance I told her I was not comfortable with him being transferred. She went to speak with his group of doctors. After a few hours she came in and stated that they agreed he would be staying in Boston.

Just in time for a huge snow storm!  I love snow but snow in Boston is not snow at all. It all disappears in just hours. They haul it off to the bay! WHAT CRAP!

January 12^th - Colton’s oxy levels are down into the low-40s. His nurse does something no parent ever wants to hear. She presses the panic button. The noise is not what broke me. What broke me was the fact that 30 people. Nurses. Doctors. Clinical Assistants. Flooded his room. A fluid cart was brought in along with a crash cart. All I could do was stumble back and sit in the chair-bed I had been sleeping in. Someone comes over to us. She says “I know this is very scary but I am going to go over to the bed to see what I can find out for you.” There are many people talking. We are going back to CICU.

The ‘umm’ doctor once in the CICU thanks me for voicing my concern because had he been in the ambulance when this happen (and we would have been had we went to Hartford) we would have lost our son. The nurse that we have is the same nurse that we had our very first day. Nurses in this hospital work 12 hour shifts. His nurse sets us at ease and we go down for dinner. We get a phone call and Colton had another Tet spell that sent is oxy levels below 30. They are putting the breathing tube in and sedating him. We leave the cafe and up we go.

One step forward two steps back. Poor guy. Here you are again. In CICU. Not even a month old and you have been in 6 beds and not one your crib in your room in our house.  I am sad for you. I am sad for me. I am sad for us. Back to the breathing tube. Back to sedation. Back. Back. Back.

The 18th I wake up to a baby crying.  I think 'that baby sounds close we must have a new neighbor... no that is COLTON!' With a breathing tube you can not make noises! Colton decides that he does not need nor want his breathing tube and at 5:45 he removes it. Not even a month old and he is such a fighter. Good and bad. He is a fighter!

 He finished his 21 days of antibiotics on the 21st. He was on the antibiotics because he tested positive for a type of ecoli that is common in non C-section babies at birth. Most babies are able to fight this and it is never known that they have it; however, with his heart condition his body reacted very negatively.

Now it is time for a plan. He is still having mini Tet spells and can not go home while having them. Surgery it is. The 26th our less than one month old - our 29 day old baby - will be having open heart surgery. There is no way to prepare yourself for this. Even though I knew for months he would have to have surgery before he was a year old this hit me in a crazy way. After several ups and downs and the prospect of Colton being in a hospital for the first 6 months of his life or more he is able to convince his doctors that he needs his surgery. And he needs it NOW!

 The morning of the 26th after a semi sleepless night and much nail biting (which I have not done since I was a freshman in high school). We find out that Colton’s surgery will be postponed a day. There is a baby that needs her surgery today or she may not be here tomorrow. We gladly step aside and let her in. We know that Colton will be here tomorrow even if he does not get surgery today he is stable. And if he were in need of emergency surgery we would want someone to do the same for him.

 January 27th - Two days before he is a month old surgery. Heart surgery. Major open heart surgery. 7 hours of repair. What did he do to deserve this. He did nothing. He is only a baby. He has done nothing. I should be going through this. I have been on this earth for almost 26 years. I have done more to deserve to be on that table then this little baby ever can in his life. It is him. It is not me. He needs me. He needs his daddy. He needs us to stay strong for him. It is what it is and knowing this is the next step to helping him be and do all that he can. Many minutes of very disorganized thoughts. And I come to grips with the very out of my control situation. We get hourly updates to know when he is going on ‘the machine’ (the machine that pumps blood through his body and lungs while his surgeon is working on his heart), when the repair starts, when the repairs is complete, when his body temperature is brought back to normal, when he is off the machine, and when he is in his room. My mom was able to be with us on this day in person. We know that there were so many others there is thoughts, prayers, and spirits. And thank everyone very much more then we will ever be able to express.

Over the next 10 days he both impresses and shocks his doctors. He has drain tubes and medicine lines out quickly and he starts to gain weight and handle feedings. He is ready to go home. He passes his car seat test. He passes his hearing test. He passes his echo. He passes his doctor check.  And so we go! HOME!

After having 11 beds he gets to sleep in his very own. He gets to meet his furry brother and sisters. He gets to see his room that his Grammy painted green and yellow and Grandma painted a couple beautiful pictures just for him.

February 6th 4pm – After our 2 hour trip and a stop to feed him at a rest stop… WE ARE HOME! WE ARE A FAMILY IN OUR HOME! As much as I had wanted Colton to be healthy and home I never thought it would be so strange. After spending 40 days in a hospital not knowing for sure when we were going home I was working on knowing that tomorrow I would wake up in a strange place. Thinking of home as a strange place feelings so wrong now looking back but it was a strange place. And somewhat scary. I had been surrounded by people not a few but several for 40 days. All I have wanted is peace and quiet. And time just me and Colton. Me, A.J., and Colton. I was beyond happy to be going home. But I felt strange. Not for long though. Laying Colton in his bed the first night then going to bed. My bed not a piece of foam in a hospital made everything great! He spent his first night in his bed then the next several nights he slept in his bouncer right beside me.

A.J. and I are very lucky to have Colton. If I had to pick one thing for Colton to know in his life it is how much he is loved not only by A.J. and I but also by his grandparents, his great-grandparents, his uncles and aunts, his great-uncles and great-aunts, his cousins and people who will never met him or know more than his story.

Every morning I hear Colton say ‘come get me.’ I go in and get the best good morning smile that a mother can get. I pick him up and we start our day together. And at no point do I see Heart Defects or Down syndrome. I see Colton. But then we have a doctor’s appointment, a cardiologist appointment, a therapy appointment and I am reminded that these things will always be a very big part of Colton’s life as well as A.J.’s and mine. I just hope that A.J. and I can teach Colton acceptance. Acceptance of those that do not seem normal and those that do not accept him.

It breaks my heart to know that there are babies and families out there that have things worse off than we did/do. There are families that have been up there for months! Babies that are waiting on a heart! Babies that will never see the walls outside a hospital again. Knowing all this makes me know that I am the luckiest woman in the world. I was able to bring my baby home. I am able to wake up tomorrow with my husband and baby and sun or rain put a smile on my face and be. I learned that luck and happiness is what you make it. Bad things happen to all. Young. Old. Rich. Poor. Prepared. And not. All. It is what you learn from it that makes you lucky. And if you smile and look at the bright side you can be happy no matter what is happening. We are right where we need to be. Everything does happen for a reason. You/we may never know what the reason is but it is there.

It was a very tough 40 days and I will never be able to express all the feelings that I felt during that time. There are pieces that even though I remember I can not express in words. I know that many people did many things for us and our families and we are thankful for them. More thankful then we will ever be able to say. I pray every night that all these people the ones in the hospital, the ones in MA, the ones in CT, the ones in WV, and the ones everywhere will never need but will always get the great actions that we were given and continue to receive.

We have been back to the hospital and as hard as it will always be to take Colton into the hospital - in a way it isn’t and that is something I will never be able to explain more than that.