The first night home and day after have been such a tornado of emotion.
Leaving Evan last night when we were discharged he had a dip in his heart rate after skin to skin with Kevin. He was perfect while on Kevin but the transition was a little too much for him. The bradycardia spells are already scary, but to add that he was fine on Kevin really tore at us both. In our hearts it is already so hard to give them up at skin to skin time but to know it is hard for them to be taken away makes it unbearable.
We left and I cried as we left the hospital. It felt so surreal to be leaving not pregnant and without my boys.
We went to pick up Noah at my moms, who was excited but pretty shocked to see me since everyone but me has been coming to get him and take care of him but me.
He acted all bashful and shy when he saw me but as soon as we put him in the car he kept pointing and saying, “Mom! Mom! Mom!”.
We had to go to the store after. For pain medication and food.
As I walked through the store I felt like I was in the twilight zone.
I went into the hospital and everything was Halloween and orange and black and I came out and everything is all Christmasy.
It took everything not to break down in the grocery store. Just two weeks ago I would grocery shop and be stopped to ask what we were having and I would so proudly say, “two identical twin boys!”
It is hard for me to believe that the world is still going on normally when our entire lives have been turned upside down.
People were complaining about not knowing what to eat for dinner or that their children were acting up and I wanted to shake them. I know this sounds horrible but I really do want to scream at people who are complaining right now.
It is all so trivial. Really. I feel guilty for ever complaining before, I know that isn’t rational but when you walk into the NICU and see little, tiny, innocent babies fighting for a chance at life and then you walk out and see people taking it for granted it makes you a little bitter.
But then again I think I am doing my own form of complaining about other things.
I went to put a load of clothes in the washer and the seal broke. On our front loading machine. Seal breaking on front load washer = flood in kitchen.
So I cried on the kitchen floor soaked in laundry water. I guess it is just one more thing.
Like all the other normal things. Bills need paid. Appointments need made. Things have to keep going.
I just personally feel like life should be put on pause for Aiden and Evan, pause it all just so they can get better.
Last night we set our alarms and called the NICU every two hours for updates. They just had the brady episodes all night. Which to us made for a very long night but the nurses weren’t worried.
Today they called me after the doctors team did their rounds.
Here is what I got from today’s rounds:
He needs a blood transfusion today. They just have taken so much blood with all the testing he needs a little more. Them telling me he needed one just about killed me. Luckily before we had them they already explained the entire process to us and prepared us for it. Another NICU thing that sounds scarier than it is. He won’t be fed breast milk for 24 hours, just so his body doesn’t have to work harder digesting after the transfusion.
His billiruben levels went up a little but they are ok with him not being in the light since he is a little older now and they will keep checking every day.
He had a few brady episodes last night but they said that he was pretty much self-correcting all of them (he had 5). So that is good. He is still on CPAP.
Evan’s billiruben levels didn’t change much, but he was so bruised and a little bigger than Aiden so it is taking him more time under his light.
Evan’s feedings are being increased.
Since he didn’t handle going to the CPAP so well he is back up to being on the CPAP with 30 auto breath rates per a min. So he is breathing but the machine gives him 30 breaths a min to help keep the stress off of him.
They had me authorize a blood transfusion if needed over the phone for him.
Both of them had repeat heart echos for their PDA openings in their hearts.
They are on the fence on whether or not to treat them, not sure if they are closing on their own or if they will.
They are going to do more labs before treating them.
Noah has kept me very busy today. Cuddling, giving me all his toys and sharing his snacks, smothering me in hugs and kisses.
He slept with his arms around my neck last night and kept opening his eyes and smiling every time.
He is really happy to be home and happy to have his mommy back.
Waking up and making him breakfast and playing with him and making him lunch and getting back to normal by force is helping keep my mind off of it every second.
It is weird changing Noah’s diapers after changing Evan and Aiden’s diapers that are the size of playing cards.
Even though Noah puts up quite a fight, those two little guys really do put up quite a fight when we change them!
Right now I am in that breaking in phase of the new NICU mom.
I am getting through dealing with not having my boys with me. That I didn’t give birth to two chubby little boys. That somehow we are preemie parents.
Dealing with the sadness that with Noah there were baby showers, flowers, gifts and vistors and so much happiness. That at the end of all the pain there was this baby that we got to hold touch and take home 3 days later.
This time around there was so much stress, pain and now more stress and pain.
I am thankful that they are stable. It could have been so much worse. It still could be so much worse.
I am learning all the terms, all the schedules, meeting all the angels taking care of my little boys, figuring out how to cope and attempting to not obsess over every single monitor or stat.
I don’t know how to do this. This is the first time in my life I have used the it’s not fair card. Because it isn’t.
I have asked why me, why them, why this?
I haven’t stopped praying.
I can’t stop crying. Today I found the outfits we were going to take them home in and unpacked the hospital bag with their little hats and binkies. I just broke down.
I am thankful that Noah is at an age that he doesn’t realize what is going on and how broken mommy and daddy and his little brothers are.
Kevin and I do our best to hide it around him because even if he doesn’t understand what is going on we don’t want him to worry about us crying or worrying.
This breaking in period is just so painful and I am afraid it will never get better.
I just want someone to tell me, guarantee me that they will be ok.
That is why we will keep praying.