Saturday was such a strange day! We started out worried about her echo-cardiogram to tell us whether or not she needed the surgery to close the PDA. The fabulous news is that she did not need the surgery which was a major victory for us. We were so relieved she wouldn't have to move to another hospital and she wouldn't have to go through the trauma.
We went back that evening to visit her and the doctor was there and explained to us she was having trouble with her lungs. It may or may not be an infection and she had a bit of bleeding in her lungs. For some reason they couldn't explain she was getting enough oxygen but she wasn't getting rid of the carbon dioxide. They did chest X-rays and were checking her blood gasses every two hours instead of every six like they had been before.
Talking to the doctor he made it sound very bleak. He suggested we could try a different kind of ventilator (and oscillator) which vibrates the oxygen in and the carbon dioxide out instead of the normal in and out breathing. We left feeling absolutely crushed and not sure how this would turn out. I was terrified of the oscillator because the little girl in the next bed (the 23-weeker) that didn't make it had an oscillator. I didn't want to share this fear with T however since that little girls death hit him really hard. The funeral is today by the way, it was in the paper yesterday.
They started Azure on steroids to beef up the lungs, adding more elasticity so they could inflate better. She seems to be responding well to that. She is also on a new antibiotic just in case it is an infection of some kind. They gave her platelets which seems to have stopped the bleeding in her lungs and she is resting much more comfortably. (Her blood may not have been clotting leading to blood in the lungs and a bit in her urine. The platelets helped restore the clotting which stopped the bleeding.) She didn't seem to be in distress before but she was agitated, couldn't sit still or didn't find her position comfortable.
Sunday it seemed like everything turned around. She is sleeping well and her blood gasses have gotten a bit better and are now maintaining. We also learned to talk to a nurse after talking to the doctor since he apparently likes to give the worst case scenario. The nurses will tell us the same information but it doesn't come across as doom and gloom from them. They are much more practical and reassuring. (My personal opinion is that the Neonatal Intensive Care Unit is NOT a place to be spouting off worst case scenarios. We have enough on our minds without unnecessary worry.)
So, all in all, she is doing well. Her skin has improved, she has not had insulin in a couple days, she is getting enough fluids and oxygen and her heart rate and blood pressure have been strong and steady. Her eyes are open and peaking around when the lights are dimmed down.
It was a long weekend but it looks like things are improving. We know there will be ups and downs on this journey. I think this weekend was a bit of both, but we are coming out on the good side.
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13 comments:
Blue, good news after a bout of bad is so typical in the NICU. Be strong. Don't be afraid of the oscillator - it really does have a practical use. My son had one after a particularly bad bout of breathing (after surgery, btw) but it was just what he needed to rest up and get better on his own. Thinking of you and praying for all of you.
Hey!
Please hang in there!! It is long journey.What I had found is that contrary to the popular metaphor, having a baby in the NICU is less like riding a roller coaster than being dragged behind it by a long rope. The ride beats you up. I don't mean to scare you; my son is home after spending 100 days in the NICU. He is a 23 weeker. Life in the NICU was hard it's one step forward and 10 steps backwards. Please don't worry about the oscillator my son is alive because of it. I know what you are going through please get educated about all the preemie conditions and don't be scared to ask questions. Lastly take one day at a time.
Blue...still keeping you and sweet azure in my thoughts.
My goodness, what a rough ride. That doctor needs to be knocked about the head until he gets some sense! I'm so glad that you have found nurses who can give you honest information in a reassuring way.
What Tracy and Anonymous said is really true of any ICU patient -- this back and forth is to be expected. However, every day that she grows and gets stronger is another day won in the battle.
Blue,
I so hope that Azure continues to improve. I am so sorry that things did not go as planned. I pray, I hope, for you and your family.
Thinking of you and your family.
saying a misheberach for you all...
What a relief that the Indocin did it's job. I remember having the exact same feelings- terrified that the 3rd and final round wouldn't work, and that B would would need surgery.
Does your NICU have some sort of support group? We found ours to be tremendously helpful.
My son was on an oscillating ventilator for over a week before he "downgraded" to a regular vent. Try not to get discouraged... like the other poster said- in the NICU, it's one step forward, 10 steps back. But you'll make it.
I will be thinking of you and your husband and of your new daughter. May she grow and thrive.
Hope Azure continues to do well. I will be thinking of you and your family.
Thinking of you all too!
I hope Azure continues to do well - twenty-four weeks is so tiny (well, duh, you know that!) but she sounds like a little fighter. Good luck to all of you!
Congratulations on Azure! I'm mom to a 27 weeker (1lb 15 oz)-he's 3 now and runs me ragged daily. Reading about Azure reminded me of things I had forgotten. I never thought I would forget a moment of life-in-the-NICU, but I did- I guess what I'm trying to say is someday you too will probably forget most of it, when she's home and running you ragged daily! Hope she's home with you soon.
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