Our new normal.

This week has been a week.

While so many people are busy finishing up their Christmas shopping or getting together with friends we have been holding our breath waiting/pushing for Aiden’s heart surgery and trying to hold our lives together, but it is getting hard.

This week we were told that they were going to do another echo on Aiden on Wednesday and a chest xray to see if they were going to do his PDA surgery. When last week we were told he was going to have the surgery last Friday. The doctors were hoping his PDA would close on its own but we knew in our hearts it wasn’t going to.

We had done a lot of research and spoke with a lot of doctors and knew Aiden needed this surgery sooner than later. Every time someone would come and listen to his heart their eyebrows would raise and they would make a comment about how large his murmur was.  It wasn’t going anywhere.

Having an open PDA puts a lot of extra stress on a baby and puts babies at a higher risk of developing NEC. So our thoughts were why start his feeds with a HUGE PDA opening and then stop them to do it at some undetermined point in the future.

We spoke with our team and let them know our view on it and they decided in light of his murmur being so loud, him not being able to be on normal fluids (a “double” fluid restriction) due to the PDA and our stand on it to do the echo a day early.

That day I had my two weeks late first post op appointment with my doctor.

I thought I was doing ok that day. I thought I had myself pulled together.

I was very wrong.

I signed in and sat in the far corner.

The last time I was here I was pregnant.

I was still supposed to be pregnant, coming to see my doctor twice every week anxiously awaiting my feisty little boys.

I tried so hard not to cry. Kevin scooted close to me, his eyes so caring, he kissed my forehead and the tears just started to pour.

I tried so hard not to break down. Happy pregnant moms filled the waiting room and my obviously not pregnant self and tears quieted to once happy room to an awkward silence.

All the other women were called before me. All passing me and glad they were not in my shoes.

When my name was called I walked to the back and the nursed asked how I was.

I hate that question.

No one wants to hear the real answer.

How am I?

Horrible. I am living in my own personal Hell. I am in a nightmare I can’t wake up from and that I can’t see an end to.  My soul is aching with unbearable pain every second of the day. There is no break from this torture, not even in sleep. I am the worst I have ever been in my life.

Instead of answering with my bitter NICU mom response I simply said with a cracked voice, “I am ok.”

We were placed in our room and waited for the doctor.

As soon as she came in she saw my face and asked how I was and just as before I tried to just repeat, “I am ok”, this time it came out much more choked up.

She said, “you are not ok, tell me what is wrong.”

I started sobbing and told her it was just too much to be here not pregnant, that I wanted so badly to be pregnant with them right now and I went through everything that had happened and she just stood in awe with tears in her eyes.

She gave me a big hug and told me she would pray for them.

We left the appointment and felt so out of sorts.

We still had not ate but I had a horrible sore throat and still have had no appetite so we decided on coffee and tea. We went to our local Starbucks and tried to feel normal.

Instead we felt like we stuck out like sore thumbs.

Everyone was chattering and laughing and we just stared into our drinks, sipping quietly, our minds going a million miles an hour.

After sitting for about 15 minutes we couldn’t do it anymore and left.

We went back to my mom’s to be with Noah, he is as normal as we can feel. He is such a good normal too.

It was then that we got the call.

The doctors decided to do Aiden’s echo a day early due to his murmur being so loud, not being able to take in fluids at his normal rate (he was on a double restriction) and our stand on that matter.

As soon as they saw the results they scheduled the surgery. His PDA was huge.

They said they were going to do it the next day.

We were caught off guard, not even expecting his echo to be done that day and certainly not expecting surgery the next day.

Admits all of this Kevin has transferred stores and Wednesday was his first day. Luckily he was able to switch everything so he would still be able to work but leave whenever we got the call that they had a time for surgery.

We are lucky he did because they ended up calling and letting us know that a baby in very critical condition needed surgery immediately and Aiden’s surgery would actually be Thursday. He didn’t want to not be there for his first day and was anxious to get started and taking a day off when we don’t have many left to take for him to not have surgery would have been quite a blow to us, luckily Kevin had Thursday off so we didn’t have to worry about juggling anything more than his shift that day.

Kevin got home and we went to see the boys and stayed for most of the night.

We got home and tucked Noah into bed and tried to get some sleep, but sleep never came.

We didn’t sleep Tuesday night either. There is no way to sleep the night before your child is going into surgery.

We just laid there tense and scared. We drifted in and out of small periods of sleep but would wake up from nightmares of monitor beeps and alarms only to be in a worse nightmare of the horrible purgatory we were in.

The next day we were all in a daze, a fearful daze.

We got ready and made our way to the hospital.

When we got there he was being intubated and they suggested we wait around the corner…being told you should wait around the corner because your child is having something done to them that you can’t handle is gut wrenching.

Once we were able to go into his room he was obviously upset. He was bright red and unable to cry due to his breathing tube but his face grimaced in pain and anger.

Even though we were allowed into see him they were still preparing him for surgery and having trouble with his respirator so we weren’t allowed to be very close for most of the time early on.

Here we were back in this hellish state where minutes seemed like hours.

Where doctors come in and tell you all the risks, like “we could get in there and go to clamp the valve and it could go bad and there could be no controlling the bleeding and there would be nothing we could do, he would die.”

It is the doctors job to inform us of the risks and it is our job as the parents to absolutely freak out when told there is such a risk.

before_surgery_pda_3

We had read all the books, spoke to countless doctors and nurses and not one of them mentioned that risk. That was such a hard risk to take in.

Before when Aiden was being taken to surgery he was guaranteed to die very soon without the surgery. This one we were sending our happy little, much healthier little boy into a planned surgery, one that there was a chance he might not come out of but very much needed and was saving his life…just not at that moment like with the NEC surgery. He couldn’t live with this and it needed to be done.

before his surgery

before his surgery

We were asked dozens of times if we had any questions but we had none, none that they could answer any way.

The only thing parents really want to ask is, “is my baby going to be ok, will you fix them, will you bring them back to me?”

before_surgery_pda_2

All I could do was ask them to take care extra care with him and they of course all assured me they would.

They asked us to clear the room so they could start his transport and before we left I knelt down by his bed and whispered, “I love you buddy, you are so strong and this will be over before you know it, eventually you won’t have to be so strong but God has you right now and so many people are pulling for you so if you need to lean on them you can. We all love you and believe in you.”

Waiting for them to be ready to start his transport to the OR seemed like an eternity but when they finally came to take him time went by in warp speed.

They wheeled him to their elevator and we walked the same path we took when he was wheeled down for his NEC surgery.

Kevin and I hand in hand with our moms behind us went to the elevator to meet Aiden in the hall in front of the OR.

In the elevator I said, “I can’t believe this is our new normal, that paths to OR’s and surgery is becoming normal.”

We walked out as he passed and the nurses told us they would let us know when he was done and out of the “danger zone”, the zone where he could bleed to death. While I was comforted they would let us know there was no comforting Kevin or I knowing our baby was going into that danger zone.

We sat in the regular waiting room this time, aware last time we were asked not to because they weren’t sure he was coming back.

Our warp speed came to a stop when he went through those OR doors, time went by so slowly.

I sat in the waiting room so I could see the OR door and I anxiously watched every person and their face as they came out the OR doors. I was searching for some sort of clue, some sort of hope and pleading with God there would be no sign of defeat, dread or failure.

We all tried to make small talk and talk about how good this surgery would be for Aiden but none of us could get our minds out of the danger zone.

After about 30 or so minutes a receptionist came around the corner and looked at us and asked if we were the Teall’s and we said yes, she then said, there is someone on the phone for you about Aiden’s surgery.

Our hearts all paused, somehow I got from the chair to the desk but I don’t even remember walking there. Kevin stood right behind me, his hand on my back and our moms right behind him.

“Aiden’s mom?”

“Yes”

“He did great. He had a huge opening but he did great! He is clamped and we are starting to close him up, we just wanted to let you know.”

The biggest smile burst across my face, I felt so faint.

“Thank you, thank you, thank you so much.”

I turned and said, “he is clamped and they are closing him up, he is ok.”

I buried my head in my hands and everyone gathered around me because I couldn’t talk after blurting out that little bit. I was so happy and in shock from relief.

Kevin came over and said, “I think I just passed out, I really couldn’t hear, is he ok? What did they say, is he ok?”

Our mom’s filled him in and we all hugged over and over in the lobby so thankful, so very thankful.

Dr. Goodwin came out after the surgery was all finished, he is an amazing man. Alice my mother in law described him best, he is a perfect mix of Santa Clause and God. He is the surgeon that did Aiden’s NEC surgery and he has such a confidence, such hope that when you meet with him you know your child is safe with him.

He told us his valve which is supposed to close at birth, was almost the size of his aortic valve and they had to use two clamps to close it but it was closed and went wonderfully.

I wanted to hug him. I wanted to jump up and hug him and never let go.

This man has saved my sons life, twice.

Instead I tried to thank him as much as I could and like it was no big deal, he just nodded and said, “my pleasure”, and winked.

When we went back up to see Aiden they had put him in the hat I made him that he had never got to wear.

after_surgery_pda_1

He was still asleep from the sedation but looked so good, like nothing had even happened.

I was so thankful, I hoped he could hear me when I whispered to him to tell him what a good job he did and how proud we were and how much we loved him.

after_surgery_pda_2

The rest of the day has been a blur.

While I have the worst of my anxiety before and during everything that has been happening, Kevin it hits after.

The rush of it all hit when we sat down to eat dinner.

He couldn’t eat. He put his food up and came and sat back down with Noah and I.

I asked him what was wrong, his lips were pierced and his eyes were wide.

And tears just started streaming down his face.

He explained it all perfectly, “how is this our new normal? How do we go from surgery this morning to sitting at dinner? How do we get great news but they are still at the NICU and they have such a long road ahead of them? How can this be happening?”

I had no answers. I just hung on to him and let him feel how bad this hurts and let some of it leak out.

Really that is the only way it ever seems to lessen the pain or at least numb it.

Leaking it out through tears.

I told him that normal for us now was only second to second and day by day. That we have at this moment three beautiful boys healthy as they can be and that they are OK and that is our normal for this moment and that is a good normal.

Kevin took a shower and tried to wash away the stress and then went to call on the boys and we got a scare.

Aiden’s blood gasses weren’t looking good and they were going to move him to the oscalator vent. The last time he was moved to that was when he was in organ failure. They said it was probably his sedation but they would do another blood gas in an hour.

No sooner did he hang up the phone were we putting our shoes on and out the door.

I called Kevin’s mom and she really wasn’t sure what it meant but we both didn’t like how it sounded and we only had bits and pieces of information so we couldn’t really understand what was going on.

We didn’t know if his systems were shutting down or if his body wasn’t responding to his surgery well, really we could just guess.

Once we got there they got the resident to talk to us and she said he was just really, really sedated still and wasn’t wanting to breathe at all and the vent they had him on could only do so much but his C02 levels were creeping up and if his next blood gas came back bad they would have to switch him to the next vent up to help him get rid of the C02 in his blood.

I went over to his bed and he looked like he was still so out of it but I knew I could help him.

I opened up his isollete and started to talk to him and cheer him on.

I kept talking to him about anything and everything. About all of the people praying for him and Evan and rooting them on. About how much better life is going to be one day and that he won’t remember any of this. I told him about how Santa came to visit him and Evan in the NICU and brought them their first Christmas gifts. I told him that Evan had been acting up the entire time he was in surgery and calmed down once he was brought back up.

I just kept talking and saying, “come on Aiden, open your eyes buddy!”

I then gave him my finger and he squeezed it so tightly and started to squirm. He then started trying to open his eyes and after I cheered him on enough sure enough he opened his eyes.

Not only that but after talking to him and holding his hand his oxygen was stating at 100 and had to be moved down.

The nurse came in and did the blood gas and when she came back with the results she said it was amazing. She said he totally normalized and didn’t need the other vent and since he started waking up they didn’t think he would need it.

They said he just needed to hear my voice. That everyone else had been in to see him, talk around him and even draw labs on him but he perked right up when he heard me.

Really I don’t think Aiden could have made me feel more loved.

So now it is 2am and Kevin and I are waiting on the last blood gas to come in before we go to bed.

I am so glad this surgery is behind us and not looming in front of us.

We are both just exhausted. We thought we knew what exhausted was before we had Noah, then Noah really defined exhausted, but this is so different it is a fatigue that creeps in to ever cell in your body and doesn’t get better with sleep or rest.

I feel like shutting the world out, but I know I cannot. I need the strength from everyone who is supporting us.

I gives me something to lean on. To be able to have such constant support and so much of it really holds us up when we feel our weakest.

It is easy to look ok on the outside and try to say we are ok but when it is just us it is hard.

Kevin’s mom said it is like that Verizon commercial, with the “can you hear me now guy” and all those people for miles and miles are behind him. It is just like that, without the annoying tag line.

Whenever we convince ourselves we are alone or that we can’t possibly go through another day like this someone calls, there is an email or text filled with love and support, people from all over the world send us messages online or there is a card in the mail or even just another ‘like’ on their facebook support page.

It all helps.

So with that I think I am going to try to go to bed and say goodbye to today. It was a good day. Even though it was terrifying and even though we had a scare, it was a good day. We got over one more hurdle.

So I’ll thank God for a good day and close my eyes with faith tomorrow will be another good day.

after_surgery_pda_3

right after his surgery

Evan's favorite way to sleep, limbs hanging out and his head tucked down.

Evan’s favorite way to sleep, limbs hanging out and his head tucked down.

Their room

Their room

aande

 

 

Please share their story and fight, there is no such thing as too much love or too many prayers. Pray for Aiden & Evan

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7 thoughts on “Our new normal.

  1. I don’t know you, but I found your blog via Prayers for Preemies on FB, and since reading your story, your boys have been in my prayers every day.

  2. Heart-wrenching. Sending you warmest wishes for a full recovery asap. My nephew was born 2 months preemie and needed surgeries, but is now a healthy and thriving 9-year-old. I hope that your boys have similar fates. It is possible. I have seen it and believe with all of my heart.

    P.S. Sometimes it can help with depression during difficult times to share photos and blurbs in our online photography gallery. It is mental health related but we have contributors going through so many difficult things and it can make people feel less alone. Sometimes creating something, like photography, can be a good distraction and even therapeutic, even though it must feel like the last thing on your mind. It does when I am depressed. These or others would be totally welcome. And you never need to smile or pretend you are okay. Also, your story would reach 2000+ more people. If it could help for you in the slightest, we’re here. Sending love. Let me know if you would like to share or if there is anything we can do. brokenlightcollective@gmail.com

  3. Came across your story on Facebook. My husband, 20 month old, and I lost twins in September and our first baby in March 2010. “Peanut,” our first, had a beautiful heartbeat and we were told he was perfect, but at 9 weeks, we lost him. The twins’ hearts never got to beat. They were sharing the same sac. Nevertheless, still precious gifts to us, if even for ten short weeks.

    When I saw your sweet babies come up on my home page over and over again, I knew the Lord was leading me to you and to pray for your family. I am so thankful Aiden’s surgery went well. It’s so evident that your baby boys already know and love you, your husband, and Noah so very much.

    Of course you cheering Aiden on turned him around. You’re momma. You’re his everything because he grew inside you. Your strength is amazing. You are Super Mom, even though you may not feel like it at times.

    Beautiful gifts, Evan and Aiden, the Marshall family is praying our hearts out for you two.

    Hugs and prayers and love,

    Steve, Andrea, Cohen, and our three angels in heaven

  4. Pingback: Welcome home Evan. | love life & pugs

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