I obviously didn’t have a good feeling about my babies getting any invasive procedures. When we were told they needed an iv threaded through their tiny veins up to a large vessel by the heart (PICC). ..I was determined to do whatever we could to avoid it. I got away with it for 24 hrs. After that, it took about 5 nurses and 2 different doctors to convience me they needed it. We were at the point where the risks of keeping in his old belly button IV were high… Risk of infection especially, and they had to remove it. He would need this new PICC line until he could get up to “full feeds” because that would give him extra nutrition. They were so close to full feeds but the dr said there is no was they will get there so fast. They were advancing their feeding scheduled aggressively and they still had some way to go. 2 days ago I finaly signed the concent and agreed.
The procedure was presented as something very routine in the NICU but when it is your baby nothing really is. Nothing about giving these tiny humans fentanyl or sticking needles in their tiny veins can ever be “routine.” They did the procedure and had difficulty with Maurice.. it was traumatizing but I had some relief when it over.
I spoke with their nurses last night and early morning and and all was ok. I love that I can call whenever I want. We were planning on seeing them in the evening. I was uneasy being away from them for so long.
When James and I got there we first went into Maurice’s room. He had one arm wrapped in gauze and on the other a tiny scabbed hole where his line used to be. His nurse told me they had to remove his PiCC line. I held my breath. There are significant complications that could arise from it … was it a clot.. or even worse an infection. They have no immune system and an infection can be devestating to their tiny bodies. The scariest thing about an infection in preemies is that you can’t even tell by their temperature. Because they don’t have an immune system they are not able to respond the way we would. You just have to look at signs like breathing and heart rate. She said it was just inflammation. He had a palpable cord, or area of hardness, along the vein. It was red. My stomach turned. She was so gentle while working on him and did everything she could to reassure me. She had to put in a regular IV and told me by Monday it should be out.
Other than that he continues on CPAP , a pressured mask that delivers oxygen. He is not getting any more oxygen than room air but because he is so tiny he needs it to keep his lungs open. Without the pressure his lungs can collapse. His kidney function and heart function are almost normal and besides his tiny size .. there are almost no signs of ttts. We are just waiting for his next echocardiogram to recheck the tlarge hole in his heart or vsd. Right now it’s not causing any problems but as he grows he may need open heart surgery.. just praying ..
Peter amazes me. He is so big.. and looks so strong. His nurses say he likes to sleep on his stomach and he is cuddled up when we walk in. He was the “recipient” in ttts and received more blood and fluid than his brother. Because of this, he continues to struggle with balancing his bilirubin. Jaundice is caused by the breakdown of red blood cells.. and having more blood he has more jaundice. This will eventually resolve with photo or light therapy. He has been tolerating his feedings well. The nurse let me hold him again. This time I was a little less nervous and it was even more incredible. We sat together for over an hour.
James went back in to visit Maurice while I was with Peter. He never came back… I went into the room worried something might have gone wrong. He was standing at Maurice’s isolette holding his hand. The nurse told me he had just finished changing his diaper. I couldn’t believe it. He had only held their little hands for a few seconds as was petrified to touch them. He didn’t want to hurt them.. and I understood.. but somehow the nurse convienced him to do it and I’m so happy she did. Changing a diaper on a baby weighing less than 2 pounds is not an easy task. There are wires everywhere and they get caught easily. James was standing there with a big smile. My heart lit up.
It was just a diaper change.. we have done thousands and I’m praying have thousands more to do.. but is was special .. I’ll never forget the look in his eyes when I walked in the room.. daddy and his boys.. I imaged everything from their first bath to baseball games .. we have sons .. our boys have completed us .. completed our family in a way I could never have imaged… I can’t wait to take you home .. until routine things are actually routine. Things like changing diapers and not scary procedures. I love you and miss you already.