Lily had another 'good' day! We celebrated two days of life! Our prayers are working! Hundreds of people from all over the world are praying for our daughter - THANK YOU!! I cannot stress how much your prayers and well wishes mean to my wife, me, and our family. All of the support we are receiving from family, friends, colleagues and even strangers has been really touching. It, and Lily, keep us going.
When I say "good" - that's relatively speaking. Her vitals are now "stable critical" - Dr. Gio at first said the word 'stable'. I questioned...
"Stable?!"
"Well... how about... critical stable."
Still. He said the word stable. 24 hours of critical stability.
And that's what today was about - tremendous hope that Lily's vitals are remaining in acceptable ranges - but immediate qualification by the miracle workers, reminding us not to get too optimistic - reminding us that Lily is still a critically ill and very sick baby - she is in the middle of her battle, and she is fighting so, so hard.
Back to today's positives:
1. Blood pressure (bp) is stable and she was weaned off of the dopamine mid-morning! This is tremendous news. Her bp was measuring between that of a 26wk old and a 32wk old, all on its own. One of the ways they got her blood pressure up was the the blood transfusions - like putting more water into a sealed pipe. The pressure rises. Between that and the dopamine, it seems to have worked - for the time being, I remind myself as I type.
2. Platelet count is still stable. Lily did not need a platelet transfusion today.
3. Blood oxygen is still stable. They keep trying to wean her off of the oxygen additive in her ventilator - going from 40% down to 20%, but having to inch back up to keep the o2 saturation in her blood in the high 80s/low 90s (higher the better). When I visited her at 8p, I the saturation was 45%. So, the positive there - there's still upward mobility in o2 additive, if things turn south - which they could very quickly.
4. Lily's blood culture test came back negative!! This is also GOOD news. Means they didn't find any serious infection. Did I write this already? Sleep deprivation is starting to set in. Anyhow - this doesn't mean she doesn't have an infection. The CRP indicator (inflammation indicator) is still coming back at 2.0. But the nurse said she's seen preemis with CRP indicators of 15-17.0, which is very bad. So the infection, if there is one, is being controlled by the ampicillin. They are deciding tomorrow whether to increase or maintain the current ampicillin regimen
5. Electrolyte levels have stabilized. Lily is on an electrolyte and emulsified fat diet. It's an IV, so she isn't eating yet. The electrolyte bag looks like it has Gatorade in it. Yellowish. The emulsified fat looks like - emulsified fat. We are hopeful she will be able to have breastmilk via the IV in her umbilical cord tomorrow or Saturday. Anyhow - her electrolyte level has stabilized.
5. Breathing - She is trying to breathe - in/out, in/out, in/out - aided by the ventilator. On Day 1, it was just a sporadic 'jump' of her chest - now it's breathing motions. When you look at her chest, there are two types of movements. One is a jiggle - rapid flitters up and down is the best I can describe it. This is the ventilator breathing for her - I think they called it a multi-cycle ventilator. It's designed after bird lungs - the rapid in/out smallish breaths, instead of deeper breaths, is less irritating to the lungs. The second movement is her actually breathing - this is the one that gives me hope.
6.Her left eye opened by about 1mm, and she looked at me today! I stopped by the NICU just as they had taken her protective head band off to adjust her bedding. The head band covers her eyes and head from the bili light, which is a blue (LED, I think?) light they placed over her incubator to protect her from jaundice and help develop her skin. Looking into my baby's eyes for the first time was pretty amazing.
7. Weight loss was not severe. Lily was born at 800 grams (lb 12oz), and she lost 50 grams, a little over 5% of her body weight. Normally they expect weight loss of anywhere between 10-15% of body weight.
So. Lots of positives today. Sara and I are trying very hard to stay positive. There were a few issues, though, which I'll get into.
A Lesson in Blood Chemistry
I learned a lot today about blood chemistry. I'm asking a lot of questions. A lot of them. The doctors are great - very patient, and excellent communicators. I'm not getting into the numbers, measurements or anything with them - that's their specialty. But I need to know exactly what is going on with my daughter. I need to process the risks and benefits of different treatments. I need to know what is happening. So here is issue number one
Blood Acidosity
Not acidity. Acidosity. Fancy medical term for acidic. The acidosity of Lily's blood is a concern. It's the pH of her blood - if it gets too acidic (acidosic) then organs don't function properly. The cause of the acidosity, the doctors think, is that the alveolar in her lungs have not developed yet, so she doesn't have a way of separating carbon dioxide (CO2) from oxygen. CO2 then gets into her bloodstream, and since CO2 has a low pH (acidic), it lowers the pH of her blood.
The doctors are raising the pH of her blood (making it more basic) by intravenous Sodium Bicarbonate (BiCarb) injections. Yes, baking soda. Baking soda is helping save my child's life. I assume they did not go out and buy the orange box of Arm & Hammer. I wonder how that fix for acidosity was discovered. Was a preemie once crashing because their blood was too acidic, and some guy in the back of the room shouts "HEY - TRY BAKING SODA!" ?
Dr. Gio told us it might just be a band-aid if there was indeed another underlying issue causing the acidosity apart from the CO2 matter mentioned above. Anyway - I am hopeful that the BiCarb is working. When I left at 8pm, they were running another blood gas test to test for acidosity. The results come in at 2am.
PDA
No, not public displays of affection. Payton Ductis Arteriosis. It's a little vein in every fetus' heart that is open in utero. When the PDA is open, blood is directed around the lungs. In the womb that's the way it should be - blood isn't needing in the lungs, since the baby is 'breathing' amniotic fluid. In oxygenated environments, the PDA needs to be closed in order for blood to flow through the lungs and pick up oxygen. Quite often, preemies are born with open PDAs. They are not sure if Lily's PDA is open or closed - they are giving her an echocardiogram tomorrow (like a heart ultrasound) so we'll find out more tomorrow.
How we're holding up
I've mentioned a few times that this has been the most traumatic, heartbreaking, challenging, terrifying, difficult time in my and Sara's entire life. Our family is going through it too - grandma's, grandpa's, cousins, uncles, aunts - everyone is scared. But we are all staying strong. Seeing Lily fight gives us strength. Everyone's prayers gives us strength. There is no other option than to get through this dark, dark period of our life. There are times when you feel like you're falling down - into a rut - but you just have to pull yourself back up and keep going. I have to - for my girls. I'm trying to keep my spirits up anyway possible. Writing helps me cope with the most intense of human emotions.
Addie is doing well. She is spending a lot of time with her gran (my mom) at home. She's been asking about Sara a lot. I made the mistake of taking her to the hospital to see Sara - poor kid was terrified. Sara didn't have her IV in or anything - just a wrist band. But Addie totally freaked out. Anyhow, my mom got her relaxed and spent the evening face painting with her. They are really enjoying their time together. I think Addie gets it now - she says "mama in the hospital getting all better". But she can't wait for Saturday, when Sara comes home.
Pictures
One thing that's glaringly obvious is that I haven't posted any pictures of Lily on here. So, I'm going to fix that today. This is a picture of her just when she came out of the womb. She is so beautiful.
I also posted a picture of her hand and foot. Those precious little hands and feet. The doctors tell us to talk to her, to lay our hands on her - we do, a lot. We can't rub her skin because it's like 'wet toiletpaper', they tell us. But we can touch her.
I don't think we should jump into the full body view just yet. It's pretty disturbing with the ventilator, IV, and tube into her umbilical cord. It hit me like a freight train the first time I say my Lily like that. I'll get a pic up soon enough, but I want to show progress - once she's on a new, smaller ventilator or something. We just need to get past what I'm calling the "dark days" and into the "progress days".
Here are a few pictures of my beautiful baby girl's hands, feet, and Lily's home for the next three-to-four months. The miracles of technology, medicine, and prayer are truly amazing.
That was day 2. I hope tomorrow is a good one too.
Thank you again, everyone, for your prayers and well wishes. This blog received 750 views in the first day of publishing. Thank you for reading Lily's story.
Drifting........
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