Happy ending

Yesterday was the perfect ending to what had been a very difficult week. Not only did we have to arrange for Fiona's burial, but Brigid had a procedure done that, for a baby her size, was very risky.

The goal was to get a better view of what was going on in Brigid's trachea. The doctors were fairly certain that there was some kind of blockage or a collapse, called a "malacia" and they needed to know which it was so that they could try to fix it and stop the repeated ventilation issues she was having. The surgeon pulled no punches in letting me know the dangers of the procedure - when you are having trouble exhaling, removing your ventilator tube and sticking something down your throat is always tricky. Heck, when you weigh 1.4 kilograms, just getting from the NICU to the OR is risky. He said that usually, when children head back to the OR, their parents worry, but he is fairly confident that they will be fine. This time, he wasn't so sure. Gosh, that was hard to hear, but we both understood that it was important to find out exactly what was going on because of the dangers associated with her not getting enough oxygen or having too much carbon dioxide.

Initially, the brochoscopy was supposed to be on Friday morning, and I was sad because we had Fiona's burial that morning and, knowing how risky it was, I was hoping to be there for Brigid. I knew that the three doctors who were performing the procedure - a pulmonologist, an ENT doctor, and the pediatric surgeon - had busy schedules and if that was the only time that worked for them, I had to just accept it, but when I was there visiting on Thursday, an anesthesiologist came into her room and said, "Okay, we have an OR available in about and hour and a half and would like to do the bronchoscopy today." I was taken aback, but thankful that I was able to be there for it. I called Patrick and he came to the hospital with me. Worried that it might be the last time I saw her alive, I took a few pictures of Brigid before they took her to the operating room.

She was heavily sedated and for the few days before, had even been on a paralytic medication, hence the ointment for her eyes that frequently stayed open and her little tongue sticking out. It was so hard to see her like this, but it was the best way to ensure that she wouldn't move and displace her ET tube.

But the procedure went off with out a hitch and they were able to get a better view of the Brigid's trachea. They determined that at the very far end of her trachea, Brigid has a floppiness where there is supposed to be more of a rigidity. It's called distal tracheomalacia, and the surgeon felt fairly confident that she could grow out of it eventually. It was so good to learn exactly what was going on, and the respiratory therapists have been able to add a little more pressure to her ventilator settings to help keep that end of her trachea open, enabling her to ventilate her carbon dioxide much better than she had been.

Because of this, they have been able to take her off the paralytic medication, resume her breast milk feedings with an NJ tube - one that goes directly into her intestines, bypassing her stomach altogether - and she can just grow. We are praying that she is able to outgrow the tracheomalacia altogether and will not require a tracheostomy in the future, though that is something she may need eventually.

Yesterday, when I went in for a visit, her nurse surprised me by asking me if, after we did her hands-on care and diaper change, I would like to hold her. I was beyond thrilled, as it would be only the second time I'd gotten to hold her since she was born. She warned me that it might just be for a short time, as we'd have to monitor her carefully to see how she tolerated it. I understood and was grateful to have her in my arms just for a moment. So we worked together getting all her tubes and wires secured and carefully moving her from her bed to my arms in the rocking chair. She tolerated it beautifully and did not have one single alarm on her machines or any issue whatsoever. I got to hold her for an entire hour, singing to her and kissing her sweet face. I'm pretty sure she knows my voice now, as she tries to open her eyes whenever she hears me and will often smile behind all the tape holding her tubes in place. It is so very sweet to see.

The nurse took a few photos of us:

When I called this morning, her nurse said she had a great night and that they had been able to increase her feedings overnight to 3 mL per hour. When she weighed her this morning, she was over three pounds! She is three weeks old today - which means that her adjusted age is 31 weeks and 2 days (she's not even supposed to be born for 9 more weeks). All she needs to do now is grow.