Today was a good day. Three good days in a row! No brain bleeds, critically stable vitals, no signs of infection, and Sara came home today! Addie was overjoyed to have her back around. It's great being home again with my girls. But I can't stop thinking about Lily, 20 miles away, fighting for her life.
We told Addie about Lily. The doctors cautioned us against using the word "sick". To toddlers, 'sick' means something much less severe than Lily's battle. So we told Addie that the baby isn't in Sara's tummy any more, and that she's at the hospital because she needs help eating and getting big and strong. Addie seemed to understand that, and didn't seem terribly upset by it, which was good.
The little victories - little miracles - have been adding up one by one:
1. We've celebrated 4 days of life and 72 hours of critically stable vitals!
2. Lily's blood is retaining oxygen in the high 80s/low 90s, with the ventilator set at 40% oxygen. It was at 30% for most of the day, but at the 9pm visit they had to dial it back up again.
3. No brain bleeding detected in two scans! And we're almost out of the 4-day high risk window. They're always a possibility, but getting out of the riskiest days is relieving.
4. Blood acidosity is a little high, but it's being controlled by sodium bicarbonate and is in an acceptable range.
5. Doctors identified the PDA as being open- but it's only open moderately, as opposed to a large opening that would be hard to close. The flow of the blood is also from oxygenated to deoxygenated areas, which is less risky than a deoxygenated to oxygenated blood flow.
6. No outward signs of infection, and the blood culture test came back negative!
7. Platelets are stable, and lily hasn't needed another platelet transfusion.
We have a lot to be thankful for. Although the initial shock has passed, I still can't believe our baby was born as premature as preemies get. She is fighting for her life; having made it through the first four days, Sara and I are very hopeful and are remaining positive. The doctors don't sugar coat anything, though. We know lily has a long road ahead of her. The docs tell us "there will be setbacks." So even though she is 72hours critically stable, I know things could change at the drop of a hat.
Lily has to have another blood transfusion tomorrow. The docs have to replenish the blood they've drawn for tests, because Lily can't make it fast enough on her own. It will be her third blood transfusion- it's strange that a medical procedure that sounded so foreign, something dealing with life support or people with bad kidneys, has become a common piece of my vocabulary. I don't count a blood transfusion as a setback- it's more like a refill.
I met a fellow named Ray at the hospital today. His mother, Aida, has liver failure. We agreed to trade prayers. It's terrifying having a loved one sitting on the brink- I feel for the guy. He too, though, was positive and had a great attitude about things. We chatted for about 15 minutes. It's amazing how complete strangers can provide hope for one another in times of strife.
Sara is holding up. She's in a lot of pain- more pain than I've ever seen her in - but she, too, is a fighter. It's so good to have her home!
I'm hopeful that these posts will get shorter and shorter over time- after all...
Boring is good.
Saturday, June 30, 2012
Day 4: waking up, but still in a nightmare
Lily had another good night - she is such a fighter. She may very well be a superhero (heroine).
Lily lost only 10 grams last night. 50 the first night, 20 the second night, 10 the third night - gives me hope that she will soon turn a corner and we'll see her start to gain. It's frightening seeing such a small baby lose weight- Sara and I notice every gram that she loses.
Lily had another brain scan this morning, so we should get the results back this afternoon. I am praying there are no signs of brain bleeding brain bleeds occur with the highest frequency during the first four days of life. We're on day four now - so while day five is far from out of the woods, it will be good to be in a statistically 'safer' area, although still in critical stage for a while to come.
Her blood acidodity is still a little high, but they were able to lower the pressure and oxygen content of her ventilator. Pressure is at about 20, down from 30. Oxygen is at 35%, down from 40% yesterday- but up from the 30% they tried weaning her down to this morning.
Now that the shock is wearing off, some of the sideeffects of this trauma are beginning to become more palatable. Whenever I'm not with Addie or Lily, I feel very rushed to get wherever I'm going. Waiting in line, any line, seems like an eternity. Traffic is worse. I have to focus on not speeding- Sara will seriously kick my ass if I ding up our new car.
I've also become more acutely aware of my mental state than I ever have been before. Strength and positivity is always at the forefront of my mind; if they begin to slip, I notice it immediately and force myself to snap out of the funk. So far, it's been pretty easy to snap out of them. I've been surprised by that- pleasantly so. I really do believe that Sara and I have the strength to pull through this. After all, we have no other choice.
Life may never be "normal" again - I hope it is, though. Yesterday, I cleaned the pool when I was at home. It was nice to do something 'normal' again. But I also was struck by a guilty feeling- shouldn't I be at the NICU? Shouldn't I be playing with Addie?
I wonder if I'll ever be able to enjoy anything again. Golf, for instance- I love going golfing. I suck at it, but it's still a lot of fun. But how could I possibly enjoy spending a couple hours a golf course with all that's going on? Brewing beer - I also like that. But a batch takes about 6 hours all-in of hands-on brewing, cleaning, bottling, et cetera. That's 6 hours that I could be at the NICU. Do parents of preemies allow themselves to have some aspect of normalcy in their lives? I don't know. I hope so.
I've also been struck by how much this experience has forced me to live in the present. The first few days have been hour by hour- it's starting to turn into day by day. It'll be day by day until we are out of "critical phase", the extent of which is anyone's guess. Seeing Lily's vitals remain in range is tempting- makes me want to think about the day we take her home- her homecoming party (you're all invited). There- I did it again. Thought about her coming home... but I can't do that. It's too far in the future. I need to focus on today. Tomorrow will come, and tomorrow will hand us what it's going to hand us.
Until then, to recap the positives:
Lily's vitals remain in range. She is losing less weight than doctors would expect, and they're working to close her PDA, which should help her retain oxygen. There are no outward signs of infection or brain bleeds, her electrolytes are stable, her blood acidosity is a little high, but it's being controlled by sodium bicarbonate (baking soda...). The doctors seem to have dialed in to what works for Lily. For that, I am thankful.
And in GREAT news, Sara is being discharged today! Just a few more hours left...
We remain filled with hope and positivity; Sara and I are strengthened by your well wishes and prayers. This blog has received about 2,534 views since posting, from the below countries:
US: 2,308
Canada: 70
UK: 39
Singapore: 18
Germany: 13
Jordan: 12
Australia: 9
India: 8
Norway: 5
Belgium: 3
People all over the world are praying for our Lily- thank you all.
Lily lost only 10 grams last night. 50 the first night, 20 the second night, 10 the third night - gives me hope that she will soon turn a corner and we'll see her start to gain. It's frightening seeing such a small baby lose weight- Sara and I notice every gram that she loses.
Lily had another brain scan this morning, so we should get the results back this afternoon. I am praying there are no signs of brain bleeding brain bleeds occur with the highest frequency during the first four days of life. We're on day four now - so while day five is far from out of the woods, it will be good to be in a statistically 'safer' area, although still in critical stage for a while to come.
Her blood acidodity is still a little high, but they were able to lower the pressure and oxygen content of her ventilator. Pressure is at about 20, down from 30. Oxygen is at 35%, down from 40% yesterday- but up from the 30% they tried weaning her down to this morning.
Now that the shock is wearing off, some of the sideeffects of this trauma are beginning to become more palatable. Whenever I'm not with Addie or Lily, I feel very rushed to get wherever I'm going. Waiting in line, any line, seems like an eternity. Traffic is worse. I have to focus on not speeding- Sara will seriously kick my ass if I ding up our new car.
I've also become more acutely aware of my mental state than I ever have been before. Strength and positivity is always at the forefront of my mind; if they begin to slip, I notice it immediately and force myself to snap out of the funk. So far, it's been pretty easy to snap out of them. I've been surprised by that- pleasantly so. I really do believe that Sara and I have the strength to pull through this. After all, we have no other choice.
Life may never be "normal" again - I hope it is, though. Yesterday, I cleaned the pool when I was at home. It was nice to do something 'normal' again. But I also was struck by a guilty feeling- shouldn't I be at the NICU? Shouldn't I be playing with Addie?
I wonder if I'll ever be able to enjoy anything again. Golf, for instance- I love going golfing. I suck at it, but it's still a lot of fun. But how could I possibly enjoy spending a couple hours a golf course with all that's going on? Brewing beer - I also like that. But a batch takes about 6 hours all-in of hands-on brewing, cleaning, bottling, et cetera. That's 6 hours that I could be at the NICU. Do parents of preemies allow themselves to have some aspect of normalcy in their lives? I don't know. I hope so.
I've also been struck by how much this experience has forced me to live in the present. The first few days have been hour by hour- it's starting to turn into day by day. It'll be day by day until we are out of "critical phase", the extent of which is anyone's guess. Seeing Lily's vitals remain in range is tempting- makes me want to think about the day we take her home- her homecoming party (you're all invited). There- I did it again. Thought about her coming home... but I can't do that. It's too far in the future. I need to focus on today. Tomorrow will come, and tomorrow will hand us what it's going to hand us.
Until then, to recap the positives:
Lily's vitals remain in range. She is losing less weight than doctors would expect, and they're working to close her PDA, which should help her retain oxygen. There are no outward signs of infection or brain bleeds, her electrolytes are stable, her blood acidosity is a little high, but it's being controlled by sodium bicarbonate (baking soda...). The doctors seem to have dialed in to what works for Lily. For that, I am thankful.
And in GREAT news, Sara is being discharged today! Just a few more hours left...
We remain filled with hope and positivity; Sara and I are strengthened by your well wishes and prayers. This blog has received about 2,534 views since posting, from the below countries:
US: 2,308
Canada: 70
UK: 39
Singapore: 18
Germany: 13
Jordan: 12
Australia: 9
India: 8
Norway: 5
Belgium: 3
People all over the world are praying for our Lily- thank you all.
Friday, June 29, 2012
Endomethazine, echocardiograms, and PDAs
Day 3: June 29, 2012
Today we celebrated three days of life, and 48 hours of critical stability! Lily's blood oxygen levels are still hard to keep up without added oxygen at 45%, but it might be because the Doctors discovered that her PDA is open.
When I arrived at the NICU this morning, they were performing an echocardiogram- heart ultrasound. The scan showed that Lily's PDA (patent ductis arteriosis) is 'open moderate'. The PDA is a very small vein between the aorta and pulmonary artery. The aorta carries oxygenated blood, and the pulmonary artery carries deoxygenated blood to the lungs (for oxygenation, when they are working).
The PDA is typically only open during early gestation. Sara was doing all the oxygenating for her, so Lily's was open and allowing blood between the pulmonary artery and aorta to mix. Not a big deal inside the womb.
The problem with mixing aortal and pulmonary artery blood is that deoxygenated and oxygenated blood mix. The severity of the problem depends on they direction of bloodflow: i) if the deoxygenated blood is flowing from the pulmonary artery into the aorta, it will taint the oxygenated blood and make it hard to raise blood oxygen levels., or ii) If the oxygenated blood is flowing from the aorta into the pulmonary artery, the downward effect on blood oxygen levels is less severe, but it makes it hard to stabilize blood o2 levels without extra tank oxygen.
So, even though Lily's PDA is open, her issue is the less severe one- and surgery is not required to fix it! Doctor Gio will be closing the PDA with a form of ibuprofen called endomethazine. It causes blood vessels to constrict ever so slightly, but enough to close off the PDA for good (hopefully). It is a three day regimen, once daily by IV.
The downside of the endomethazine treatment is that lily has to wait a few more days to get breast milk. The constriction of blood vessels might affect kidney operation a bit, temporarily. If she's just on the electrolyte IV (which looks like gatorade) then the kidneys are less critical than if lily is eating breastmilk by the IV in her umbilical cord. It's risks/benefits, the doctors remind us. Her blood oxygen level is the most important thing right one, and they often see blood oxygen retention improvement in preemies once their PDA is closed. Did I just write improvement? That is such a far off concept right now. The doctors continually remind us we are still in the "critical stage". Could last another few weeks. Could last another month or so. Every baby is different, they say. I'm glad to finally have found a doctor who "doesn't practice by numbers."
The docs said the endomethazine's efficacy is very high during the first week of life, so we are hopeful that Lily's next echocardiogram on Monday will show a closed PDA.
Otherwise, positives:
No signs of brain bleeding, although there is the unexplained drop in hemocrits (red blood cell density). We are praying the drop in crits isn't indicative of a brain bleed. The doctor ordered another cranial scan for tomorrow, to see if there has been any bleeding.
Lily lost only 20g last night, as compared to 50 the first night. Docs expect preemies to lose 10-15% of their body weight, i think Lily is at about 8-9%. Losing less than docs would normally expect. Still scary, though, to see a 1 pound 12 ounce baby lose weight. Very difficult to see that happen.
Looked into my girls eyes again. Amazing.
Vitals are still stable (critical.) ! Docs are comfortable enough with Lily's blood pressure to start taking it every four hours instead of every hour. Baby steps- little victories.
Sara is holding up, she's coming home tomorrow which is great. She is still in a lot of pain, but she is such a strong woman - she's pushing through it. I think the shock is beginning the wear off for both of us, and the harsh nightmare of a reality setting in. Best case scenario, our baby is in the NICU for three to four months.
So, the NICU docs said its been boring. They like it "boring". Boring is good, they say.
I like boring too.
Thank you everyone for all the support and prayers. They continue working!
Today we celebrated three days of life, and 48 hours of critical stability! Lily's blood oxygen levels are still hard to keep up without added oxygen at 45%, but it might be because the Doctors discovered that her PDA is open.
When I arrived at the NICU this morning, they were performing an echocardiogram- heart ultrasound. The scan showed that Lily's PDA (patent ductis arteriosis) is 'open moderate'. The PDA is a very small vein between the aorta and pulmonary artery. The aorta carries oxygenated blood, and the pulmonary artery carries deoxygenated blood to the lungs (for oxygenation, when they are working).
The PDA is typically only open during early gestation. Sara was doing all the oxygenating for her, so Lily's was open and allowing blood between the pulmonary artery and aorta to mix. Not a big deal inside the womb.
The problem with mixing aortal and pulmonary artery blood is that deoxygenated and oxygenated blood mix. The severity of the problem depends on they direction of bloodflow: i) if the deoxygenated blood is flowing from the pulmonary artery into the aorta, it will taint the oxygenated blood and make it hard to raise blood oxygen levels., or ii) If the oxygenated blood is flowing from the aorta into the pulmonary artery, the downward effect on blood oxygen levels is less severe, but it makes it hard to stabilize blood o2 levels without extra tank oxygen.
So, even though Lily's PDA is open, her issue is the less severe one- and surgery is not required to fix it! Doctor Gio will be closing the PDA with a form of ibuprofen called endomethazine. It causes blood vessels to constrict ever so slightly, but enough to close off the PDA for good (hopefully). It is a three day regimen, once daily by IV.
The downside of the endomethazine treatment is that lily has to wait a few more days to get breast milk. The constriction of blood vessels might affect kidney operation a bit, temporarily. If she's just on the electrolyte IV (which looks like gatorade) then the kidneys are less critical than if lily is eating breastmilk by the IV in her umbilical cord. It's risks/benefits, the doctors remind us. Her blood oxygen level is the most important thing right one, and they often see blood oxygen retention improvement in preemies once their PDA is closed. Did I just write improvement? That is such a far off concept right now. The doctors continually remind us we are still in the "critical stage". Could last another few weeks. Could last another month or so. Every baby is different, they say. I'm glad to finally have found a doctor who "doesn't practice by numbers."
The docs said the endomethazine's efficacy is very high during the first week of life, so we are hopeful that Lily's next echocardiogram on Monday will show a closed PDA.
Otherwise, positives:
No signs of brain bleeding, although there is the unexplained drop in hemocrits (red blood cell density). We are praying the drop in crits isn't indicative of a brain bleed. The doctor ordered another cranial scan for tomorrow, to see if there has been any bleeding.
Lily lost only 20g last night, as compared to 50 the first night. Docs expect preemies to lose 10-15% of their body weight, i think Lily is at about 8-9%. Losing less than docs would normally expect. Still scary, though, to see a 1 pound 12 ounce baby lose weight. Very difficult to see that happen.
Looked into my girls eyes again. Amazing.
Vitals are still stable (critical.) ! Docs are comfortable enough with Lily's blood pressure to start taking it every four hours instead of every hour. Baby steps- little victories.
Sara is holding up, she's coming home tomorrow which is great. She is still in a lot of pain, but she is such a strong woman - she's pushing through it. I think the shock is beginning the wear off for both of us, and the harsh nightmare of a reality setting in. Best case scenario, our baby is in the NICU for three to four months.
So, the NICU docs said its been boring. They like it "boring". Boring is good, they say.
I like boring too.
Thank you everyone for all the support and prayers. They continue working!
Still fighting
Quick update on lily- she made it through another night with stable critical vitals! She is having a hard time keeping oxygen, so they had to keep the ventilator at 45% oxygen all night. They're having difficulty weaning her from the oxygen, but say that is to be expected.
I looked into both eyes this morning. It was an indescribable feeling. She is such a fighter- I am confident, and trying to stay full of hope and positivity - she is going to make it.
We will be celebrating 3 days of life at 3:58pm. Taking it hour by hour- thank you everyone for the support, well wishes and prayers. I'll provide a more comprehensive update tonight. Running off to Yonkers to rent the last specialty breastmilk pump in the tri-state area, it seems. These things cost 800 bucks so I have to get this rental!!
The blog has had 1700 views in a little over one day. Please keep sharing Lily's story. More shares means more prayers - every one counts.
Update- just got out of NICU. BiCarb has helped stabilize blood acidosity and electrolyte levels are ok. All vitals still in range.
I looked into both eyes this morning. It was an indescribable feeling. She is such a fighter- I am confident, and trying to stay full of hope and positivity - she is going to make it.
We will be celebrating 3 days of life at 3:58pm. Taking it hour by hour- thank you everyone for the support, well wishes and prayers. I'll provide a more comprehensive update tonight. Running off to Yonkers to rent the last specialty breastmilk pump in the tri-state area, it seems. These things cost 800 bucks so I have to get this rental!!
The blog has had 1700 views in a little over one day. Please keep sharing Lily's story. More shares means more prayers - every one counts.
Update- just got out of NICU. BiCarb has helped stabilize blood acidosity and electrolyte levels are ok. All vitals still in range.
Thursday, June 28, 2012
Day 2 update
Day 2: 6/28/2012
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........
Afternoon update
Spoke with the docs when they were on their 11am rounds. They're worried about infection- an infection indication called CRP (?) came back at 2.0, when they want it to be in the .2 - 1.0 range. They're waiting for two test to come back- the CRP they ran this morning, and a blood culture test that they started at day of birth. The blood culture test, I gather, is basically a few drops of blood in a petri dish. They have to see if anything viral/bacterial grows on it. If the infection is really bad, it's difficult to keep vitals in range. But since they have been in range for twelve hours, we are hopeful the elevated CRP does not indicate anything serious.
On the bright side, they still don't see any signs of cranial bleeding. And they said she is "showing improvement" relative to when she was born - but they immediately qualified that, saying that we should need to stay realistic and not get too optimistic. So right now we are praying for stability in vitals, no brain bleeding, and no infection. Or if there is an infection, we are praying it is not serious and can be swiftly dealt with by a higher dose of ampicillin.
update: The blood culture came back negative! And the second CRP test came back at 2.0, so the docs said whatever it is, it is being controlled by the ampicillin. if it were serious then her vitals would be much mire difficult to control. Her 'crits' (hemocrits, a measure of red blood cells) are low. Could be indicative of just the blood draw, or a small cranial bleed. They are not too severly worried because lily isnt showing any signs of a bleed. So they are monitoring very closely, potentially another cranial scan tomorrow.
Drifting...
On the bright side, they still don't see any signs of cranial bleeding. And they said she is "showing improvement" relative to when she was born - but they immediately qualified that, saying that we should need to stay realistic and not get too optimistic. So right now we are praying for stability in vitals, no brain bleeding, and no infection. Or if there is an infection, we are praying it is not serious and can be swiftly dealt with by a higher dose of ampicillin.
update: The blood culture came back negative! And the second CRP test came back at 2.0, so the docs said whatever it is, it is being controlled by the ampicillin. if it were serious then her vitals would be much mire difficult to control. Her 'crits' (hemocrits, a measure of red blood cells) are low. Could be indicative of just the blood draw, or a small cranial bleed. They are not too severly worried because lily isnt showing any signs of a bleed. So they are monitoring very closely, potentially another cranial scan tomorrow.
Drifting...
Drifting
Not only is it hard - it is impossible - to describe what it feels like to have a critically ill child in the NICU. So I'm not going to try too hard. The best I can do to describe it is as a combination of two things. 1) standing on the edge of a cliff, looking over, leaning over ever so slightly, and the only thing holding you back is a piece of dental floss tied around your waist. 2) drifting. You know those races where the cars drift around corners? YouTube it. Rally cars basically speed around corners so fast that their back tires 'drift' and the cars almost lose control. You're still on a race track, you're driving as fast as you can, but you're just barely hanging on. Drifting.
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
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
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