Praying for Lilliana: A Story of Hope

My life changed on June 26, 2012. My wife, who was 24 weeks 5 days pregnant, gave birth to our daughter Lilliana Hope. Lily weighs 1 pound 12 ounces. She is five days past the generally accepted viability point for babies. She has a 50% chance of survival. If she survives, there is an 80% chance of some sort of developmental issues ranging from bad eyesight to much more serious issues. Those are the statistics- but Lily is not a statistic. She is a fighter.

 I'm going to start keeping track of this. I've got to. I don't know how this story will end. It's without question the most terrifying, humbling, eye opening experience I have ever had. It is making me look at life in a new way- it is making me appreciate life's fragility. It is making me appreciate a lot of things. It is also making me very, very scared. It is the most overwhelmingly life changing experience I have ever had. It is a paradigm shift. It's like the universe has shifted off of its axis. It's like I woke up in a nightmare.

But I have hope. And faith. And I have so, so many things to be thankful for.

 Disclaimer: This isn't an easy read. Many people have asked to be kept posted- this is Lily's story.

This is Lily's Battle.

Birthday: June 26, 2012
Lilliana Hope was born at 3:38pm after 24wks 5days gestation. She is four months premature. She is delivered by c-section because she was breached. They whisked her away as fast as they took her out. The day is filled with doctors, a thousand medical terms, shock, and tremendous sadness. The feeling of emptiness and helplessness is overwhelming. It's not how things are supposed to be. The doctors are telling us our baby is critically ill - that we have a very, very sick baby. But we have hope. And we are surrounded by family. And we have a beautiful baby girl, who has a chance at life. Lily had a tough day. Her blood oxygen fell to 70s, the lowest acceptable range, and the docs had to crank up the oxygen content of her ventilator to 100%. The scary thing about 100% oxygen... If she doesn't respond to that, there's not more room to give more oxygen. Fortunately lily responded to the oxygen, and they were able to wean her off of it throughout the day, dropping the oxygen content down to 21% which is basically ventilated, filtered room air being pushed into her lungs. But we can't get our hopes up, doctor tell us. They call it the "NICU roller coaster". Sara and I prayed, and cried, more today than we have in the past decade.

 Tests/Procedures today: Resuscitation for 2 hours, blood transfusion, lung inflation, body gas test, ventilation, umbilical intubation, iv lines

 Day 1: June 27, 2012
Prayed a lot today. Lily had a tough day that ended on a positive note. They had to kick her ventilator o2 levels back up to 45%. Her blood pressure, blood oxygen, and electrolyte levels were all over the place until noonish, but the doctors seemed to dial down the meds and they all ended the day in generally good ranges. The machines are breathing for her now, but they don't need to completely saturate the oxygen anymore to keep her blood o2 levels above 90%, where they should be. Her blood pressure ran dangerously low until about 4pm, when the docs (aka miracle workers) got it within range. She needed two blood transfusions and a platelet transfusion. Her blood platelets, which help clotting, were running low. A risk posed by low platelets is cranial bleeding- which is very bad, the docs tell us. I won't get into the risks, which are frightening. At 11am, she had a cranial ultrasound to determine if there was any bleeding in her brain. I'll fast forward to the GOOD news here- her scan turned out normal!! They did not see any bleeding. This news comes as a glimmer of hope. But it's baby steps, the doctors tell us - bleeding could have started after they did the scan. They can't scan all the time- it stresses the baby. The Dr said she may run another scan in a day or two, depending on whether Lily shows any signs of bleeding. We continue to pray that there is no bleeding. Docs seem to have dialed in her medications. I guess it's like a mechanic who knows how to TRY to fix an engine, but you bring them a car make/model they've never worked on. Takes them some time to figure out what tweaks work, and what don't.

Sara seems to be recovering well, but is in a lot of pain. The pain meds don't seem to be having that great of an effect. The emotional toll of this has led to complete loss of appetite for both of us. We're eating very little. But Sara is forcing herself to eat more, for the baby's milk and nutrients, not to mention it's important for her own healing. I married such an amazing woman. I am so, so thankful that she is healthy.

 Positives: all major organs are fully formed, just not mature and operating at full blast. blood pressure and volumes are in good range, blood oxygen is in good range (low 90s), platelet levels are normalizing after the transfusion, heart rate is good in the 150-180 range, electrolyte levels are in range, and she starts a fatty/nutrient diet tomorrow. Two body gas tests came back in good range too. 

Concerns: possible infection (she is on an antibiotic to fight it), risk of cranial bleeding (monitoring very closely and another brain scan soon), platelet count (maybe another transfusion if necessary), white blood cell count (transfusion), oxygenation (ventilated), electrolyte levels (liquid electrolyte by IV on day 2), water balance (ties into electrolytes), blood pressure (being treated with small amount of dopamine), skin only a few cells thin.

 Tests/procedures today: 2nd blood transfusion, 1st platelet transfusion, ongoing ventilation, 2nd lung inflation, body gas tests, cranial scan, abdominal x-ray

 Day 2: June 28, 2012
8am: Lily had a good night!! Sara and I called NICU every couple of hours to check on her. The nurses are amazing. Vitals are all still in a good range, and they were able to drop oxygen saturation down to 25% - just above room air- and lily is holding it in her blood in the 90s. She is retaining oxygen basically just with her tiny, spaghetti sized bronchioles. The alveoli are still forming.

I can't wait for the doctors to start using the word "stable". They won't, though. They don't use the word stable for preemies born under 28 weeks. They are too fragile, and anything could change in five minutes.

 Now starts day 2. I hope it is a good one. 

Positives: Twelve hours of in-range vitals, docs seem to know what levels of meds and oxygen work for her
Concerns: same as day 1