Tuesday we went to the hospital with Steve's brother in hopes of introducing him to Natters while he's in town. When we went back to her pod to check things out the team was rounding on her and full of excitement. The 3rd blood culture bottle to turn positive was a different bacteria than the first two. She now appeared to have both staph and enterococci infections. We all considered this to be good news as it could further explain why the antibiotics had yet to be effective.
The evening was full of conflicting theories and plans of action. The neonatologists would give us their opinions and then the infectious disease doctors would then meet with us to disagree with the neonatologists. I won't bother to write it all out as it was basically a lot of unanswerable questions and frustration. They started her on a new antibiotic for the enterococci while waiting for sensitivity results from the lab.
Meanwhile they ordered another septic work-up of blood cultures, a new breathing tube and urine collection (poor baby needed another catheter). This took over an hour and we lost the opportunity for Uncle Nate to meet her.
Wednesday was a cheerful day. Natalie's 02 requirements were in the 40's and we sat watching the vent in delight. She hadn't done that well in ages. Her doctor felt it could be her new antibiotic was kicking in. Well, they had already taken her off that drug and switched regimens so I felt uneasy that we would lose progress with the antibiotic change.
Wednesday was a big day for another reason, though. Natalie's stay has become longer than anticipated, so the powers that be approved a visit from big sister Anneliese. I was nervous about taking her in because she has high hopes of holding her sister and I was afraid she would melt down when she realized she couldn't pick her up. Instead she mostly smiled at Nattie, said "she's so teeny and cute!" and then wanted to go back out to the waiting room to play with toys. It is amazing that the tubes and wires did not phase her-she just saw her very cute baby sister. We were elated to see our girls together and it is a day I will always treasure.
Thursday morning was difficult. When I called for the morning update Natalie had regressed again and her O2 needs were back up. She also had a not so great blood gas. Things seemed stable but I was so disappointed that Wednesday was not the turning point we had hoped for. This week has been harder for me in general. Had things gone "normally" with the pregnancy Natalie would have been born this week and I would be holding a robust newborn right now. Instead I am struggling to function in a life where doctors still can not assure me that we will be bringing Natalie home, or what the future will hold for her if she does pull through.
The past six months have been a daily stress of worrying over her very life. That is a heavy load to carry and lately it has become more and more difficult for me hold it up. I am trying to be nicer to myself and lighten my expectations. Yesterday I managed to shower, do a load of laundry and take Annie to a playground. I did all that while inermittenly sobbing, but I did do it and I need to focus on that rather than berating myself for not being stronger.
Thursday afternoon I gathered up my strength again, packed some books to read to Natalie (a first) and went to the hospital while Steve stayed home with Annie. I had talked myself into thinking that another day at 60% O2 was not such a bad thing and I could sit next to my little girl, read and just love on her. When I arrived there was a much different afternoon waiting for me.
Her O2 needs were at 100% and she was not perfusing well. Her color was pale and unlike her. It was another bad day without answers. Her chest X-rays showed no obvious concerns and her lungs sounded as good as they ever do. They had a few theories. Her lasix dosage had been increased, so maybe she had lost too much fluid and was not able to perfuse well. Boluses of saline were given to replace lost fluid. The other theory was that her bowels had slowed from fighting infection and she had developed some bowel complications. A belly X-ray ruled that out but they stopped her feeds just in case. The last theory was that the antibiotics were starting to work well and that her body was being overwhelmed by toxins from dying bacteria. They assured me that sometimes when babies are fighting infection the antibiotics can make things worse before they get better.
They were also concerned that the infection had made the blood vessels in her lungs "twitchy" again and her pulmonary hypertension had returned. They decided if her O2 settings had not decreased by midnight they would do another trial of nitric oxide and see if she responded.
She was also anemic so they ordered another blood transfusion and hoped that would help.
I was beside myself. Sometimes it is all I can do to remain upright when they update me on bad days. Luckily she had a wonderful nurse yesterday and she spent quite a long time talking with me along with the child life specialist. Her neonatologist also tried to calm me down and suggested that I focus on spending time with Natalie while I still have her. Being reminded that Natalie may not be forever brought the reality of the day into sharp focus. Now I had the task of calling Steve to tell him that yet again we were in a "we have to get her through the next 24 hours" situation.
I went outside during shift change (the hour in the evening when the NICU is cleared of visitors) hoping for a short walk to clear my head. Instead it was raining so I stood under the awning to call Steve. As we were discussing their plan for Natalie I looked up and saw an incredible rainbow.
This picture does not do it justice. It was the sort of rainbow where everyone stops to stare and take pictures. My heart felt so much lighter-this had to be an sign, right?
I hadn't thought about it in a long time, but early in the pregnancy I used to call Natalie my rainbow baby. A "rainbow baby" is a child born to parents after a loss-it's the beauty found after a storm. I had hoped this pregnancy was going to be the balm to heal us after our miscarriages. Little did I know that Natalie would be born in the midst of an entirely new kind of storm. Despite all that, she still is my rainbow baby. She is the bright spot in the middle of stress and chaos...she may be critically ill, but she is still a darling new born girl who makes sweet faces, stretches her arms and grasps at fingers. Sometimes she feels as elusive as a rainbow, yet here she is where I can still lay my hands on her body and kiss her sweet head. Every day that I have that is a blessing. Every day that Natalie is here is a day she has a fighting chance.
I stayed at the hospital until late in the night. I read her the books I brought and did my best to stay calm. They gave her a new arterial line to better monitor her blood gases and blood pressure. The vent settings were increased and her oxygen requirements finally went back down to 60%. It is impossible to say if the improvement was due to the increased support or the underlying cause improving. I went home with an impressive headache and a heavy heart.
This morning she seems to be doing better than yesterday. Her color has improved and she doesn't seem to be working as hard to breath. They removed the art line because it stopped working and decided she does not need a new one. This morning on rounds they feel that yesterday was most likely her "worse before it gets better" day and that she should improve now. I am hoping and praying with everything I've got. As always I ask for continued prayers for Natalie. She is my hero and amazes me every day with her continued strength and courage. In her short life she has faced more adversity than some people will see in a lifetime and yet she keeps right on fighting. How lucky I am that I get to be her mother.