Peter right after PICC line was placed

Maurice back on phototherapy due to high bilirubin and jaundice. Also changed to a mask because his nose was getting red from the prongs

Maurice waiting to have his PICC line placed

My mom came with me to see the boys. She’s been watching my girls everyday so I could also take care of my babies in the NICU. She moved in to help me recover from my c-section. She’s superwoman and I needed her by my side today.

We were waiting to find out if Peter tolerated his feedings. If he did, it would spare him from an invasive procedure. I called last night and this morning and received great reports. He had a little spit up but it wasn’t significant. I walked into his room this morning confident we did not need to do anything. He was being transferred from Cpap and a mask to a little nasal cannula for his oxygen. This was a big step in the right direction.. if he tolerates it. I could see his whole face.. he’s so beautiful.. his bed was also upgraded and he is in no longer in what they call a “giraffe.” He has all new bedding and a picture of us. He can’t see it but I know he can feel we are there with him. The nurse let me cradle him for a minute. I didn’t want to let him go.

She told me the doctors rounded early and I had just missed them. She said that he was currently on 13.5 cc of breast milk and needed to get to about 18cc. He only had a day to do it because his old umbilical line ( belly button IV)  had to come out and was at risk for infection. He could barely tolerate an increase of 0.5 a day.  He also needed to increase his calories from 22 to 24. There was no way he could make that advance in such a short period of time.  Because he is not yet on “full feeds” , he needs to get extra nutrients.  They do this by giving TPN.  You cannot give it in a regular IV because the nutrients are not well absorbed.  Also a regular IV in a preemie only lasts a day or so and they would need to be pricked again and again.  She told me they decided a PICC line is a better choice.   A PICC is a Percutaneously inserted central catheter that travels from a vein in the arm or leg to one of the large veins near the heart.  It lasts much longer than a regular IV.  She also told me his bilirubin went up and he will likely need to go back on phototherapy. He looked jaundice again today ..

We then went to Maurice. He was already  back on phototherapy for jaundice. He had his eye mask back on and was under bright blue lights.  He too couldn’t tolerate his feedings. He had some spit up late last night. His goal is 13 cc of milk and he is on 9. They are advancing him slower because of his size .. today he didn’t advance at all just changed it to over 2 hours. He too needs his old umbilical line out and will need access for TPN. Tpn stands for total parenteral nutrition and it is just that. Extra nutrients to help him grow.  Today Maurice gained 30 grams to a whopping 830 grams.  He needs all he can get.  He too will need a PICC or central line.  They will need TPN until they are on “full feeds.”   I understand why my boys will benefit from it but I still don’t like it.

We went from one needing a PICC… to none .. and now both. The procedures were scheduled for this afternoon. I asked the fellow to do it but he said the NPs and PAs are better than he is. I smiled and reluctantly signed consent to use fentanyl on my baby boys. I listened sick to my stomach as he went over all the risks ..

I met the NPs who were going to be doing it. You feel helpless.. just beg them to take care of your babies. They started Peter and I stood close enough to hear but too far to see. I heard him scream. One of the first sounds I ever heard from my baby was a scream from pain. I cried. After about 15 min they were done. Peter’s nurse said I could go in and see him.  He was wrapped up in a blue blanket .. his body still tired from the fentanyl.. and dried blood against his little arm.  He did not have as many tubes and wires because they had to disconnect them to do the procedure.  He was right next to me… I wanted to hold him so bad.  An X-ray would confirm position… and .. success. One try right in. I was so relieved .. it still was not over… Maurice was next.

A different NP did Maurice’s . The same conversation .. begging to take good care of him. She explained she would need to use fentanyl as well.. He is so small.. would it interfere with his breathing… my mind went to so many places.. I just nodded and said I understand. She smiled. After what felt like forever, she came out.. he did well .. just waiting for X-ray to confirm location. I stared down the hall waiting to see the technician. They went in… I stood outside his room.. I couldn’t see him yet. I asked his nurse.. all ok? Could it be in the wrong spot.. is it by his heart .. could it hurt him.. was he in pain? His nurse came out and said they would have to repeat the X-ray. Maurice’s head was blocking and they couldn’t see where the line ended.

They have to call X-ray again.. my baby has to be exposed to radiation again because they couldn’t see. Finally, X-ray came back .. the process repeats.. I wait.. and wait and wait for the NP to read it. She comes out to talk to me. The line is too far up into his neck and needs to be pulled down. I don’t want anyone touching him anymore. I peaked in his room and could see blood on the table next to him. He’s not wrapped up in his little bed .. he’s just lying there with masks on his face. He looks cold and scared. I see more blood on his arm. I just want to hold him and say stop. I can’t .. it reminds me that I can’t take care of him yet. He is too little to survive with me.. it reminds me that I can’t protect him from pain. It breaks my heart.

She goes in again and now I’m praying even harder. Then X-ray .. again. My tiny 1 lb baby on his third X-ray. I’m nervous about the radiation. I’m scared it did something to his neck.  She said it is good but it’s not as close to the heart where they usually put it.  It’s more of a peripheral line. She told me it doesn’t make much of a difference and he can still get nutrition through it. Also, it can stay longer than a regular iv. I don’t know much about this medicine and it’s hard for me to just accept it. But I do..I have no other choice.. I’m  happy my boy can now rest. I run in and check his oxygen to make sure the fentanyl did’t affect his breathing. He’s ok.. then I run down the hall to Peter. He’s ok too…. Mom and nanny not so ok…. I knew this wouldn’t be easy … stay strong my boys and I promise I will too 💙💙