Day 6 : Two steps Forward One Step Back -the NICU dance

I’m home … without my babies. Part of my heart is living in the NICU. I want to go back and listen to the monitors, watch the screen for every breath making sure the caffeine they are on is working and they don’t “forget to breathe.” I want to feel their tiny fingers wrapped around my hand. But then I look at my girls, how I have missed them.. for the past 28 weeks I focused on the pregnancy with doctors appointments that would take hours just in commuting and pain that would keep me from play. They need me and I need them. They will remember and part of being strong is being able to be away from the boys too. Im trying…… after a mini breakdown in the car on the way there I texted James.. why us.. why do I have to visit my babies in a plastic box .. so many why’s.. his response reminded me of how lucky I am to be his wife.. he said “I can’t answer that.. but I can tell you that everyone , including our boys and girls will be stronger for it..we will appreciate the little things more than others and celebrate even the smallest of victories. Our girls will be great and our boys will be too.” And somehow that just made sense.

I went back to see them. After almost 24 hrs away miles apart I needed to be there with every piece of my being. It is cardiac echo day and the boys were getting their hearts rechecked. Being in cardiology and understanding more than I should, I was anxious to say the least. I walked in to the wonderful nurses telling me they had a great night. I peaked in quickly to look at them.. and the looked so good. Their jaundice is improving so they both have better color ..their vitals are stable.. ask the nurses if they had any “episodes” which is basically when they just stop breathing and they didn’t and had good oxygen all night. I already feel better.

The doctors come and we start rounds. Who has baby a .. who has baby b.. I want to jump up and say me.. but right now its the nurses that have them. Thankfully they are amazing women and I know my babies are well taken care of. They start going down the list .. Maurice 6 days old, I hold my breathe .., is improving! A mini party goes off inside me. He Has intrisic kidney disease from TTTS  but he is now urinating on his own and his crt or kidney function blood work is getting better. The first few days we watched it get worse from 2.4 to 2.5 then 2.6 .. today down to 2.0!! It’s not o.6 or ideal but improving. He continues to have a Cpap  machine but he does not have any additional oxygen other than 21% which is room air same as we breathe. Cardiac wise he had a weak heart. The pump was moderately decreased on his first echo. Today his heart function is normal. The improvement he has made in 6 days is a miracle. He is still a little jaundice but that’s better too. Still closely monitoring electrolytes with small “tweaks.” We are waiting for him to do number 2 again it’s been a few days so a little glycerine suppository. He had low platelets and we were preparing for a blood transfusion but now they are normal . He does have a ventricular septal defect or vsd in his heart (hole) which is larger than the cardiologist first thought. He said if Maurice doesn’t start growing he will need open heart surgery to repair it. It can also get better .. we just don’t know . I’m focusing on the improvement and trying not to concentrate on the ” what if.” The 2 step forward and one back.. slowly we will get there.

We went to start Peter but right before we could someone came out of a nearby room of another baby and said “he’s coding. “. They all rushed into this poor babies room calm but in full action mode. A minute later everything was ok. They had to intubated him but he was stable. It scared me to my core. To think this happened to this baby and his mother was not there.. or in an instant how quickly things can change. It reminded me of where I was.

They were ready to restart Peter’s assessment. I ran in quick just to look at my boys. Just one look and hear their heart beat .. deep breath.. ok I’m ready. Peter 6 days old and improving. Again the happy party .. it’s a mini one but a good one. His jaundice improved and bilirubin normal so he no longer needs to be under bright lights. His eye mask comes off .. to see his face.. he’s so beautiful.  His kidney function was poor and he was in acute renal failure a few days ago .. now it 0.2 points away from being normal. He is doing so well on his feedings and we are increasing them ( I was able to feed him today by holding up a mini syringe connected to a tube in his mouth which goes to his stomach.) He has not had any episodes and heart seems stable. They canceled his echo for today and changed to next week because he is doing well.  He also has a little scratch in his nose from the tubes.  They changed him to a mask and he’s doing ok.  We know his heart is enlarged and he has an open pfo but he seems to be ok for now. I’m so proud of them.

Our biggest win for today was no picc line. It is a peripherally inserted central catheter that can be used for an extended period of time. Given the progress they have made , the doctor does not think it’s necessary.  It can be a source of infection and any procedure at this age gives stress and puts them a risk for bleeds or a stroke. For this one the mini party was a little bigger!

These boys amaze me. Tomorrow we have head scans scheduled to assure no brain bleeds have occurred. I’m nervous but the worry does not help anything. I’m focusing on our progress and on the way they looked. The fact that tomorrow is one week , another big milestone and we made it!! We have come so far ., yet still have so far to go 💙💙

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