First off, Lily is doing marvelously! She has been on 21% oxygen (room air) for the past two days - first time in her life!! She is now up to four full bottles a day... once we get to 8, we go home!
And she is six pounds now! She has been weaned off of her diuretic, and weaned from sodium. Her hearing test came back clear! Unfortunately she does have stage one ROP, but we are praying that it does not progress. ROP (retina related) is sometimes caused by the added oxygenation... it is somewhat common in preemies. Often, when you see kids with coke-bottle glasses, they had ROP as infants. It can be corrected with laser surgery if necessary, but we are hopeful that it will self-correct now that she is requiring less oxygen. Considering the level of ventilation that lily required for so many weeks, we are very thankful that it is only stage 1, and not worse.
It looks like she may come home on oxygen, but there is also a chance she could kick the cannula before then. Nurses are saying she MAY come home on Monday... amazing! To be at the end of this long marathon is a great feeling. It's what Sara and I are focusing on, and it's what keeps us going through a particularly stressful past week.
On that note, you're not going to believe this. Sara and I are turning into living proof that bad things happen to good people. We are upstanding citizens, pay our taxes, give back to our community, and are good parents. But some people just can't catch a break! This year, Sara and I are "some people."
In last Tuesday's rain/wind storm, our foundation and basement wall collapsed. Total cave-in. The power company cut our gas service, hopefully today it is turned back on. Sara and Addie have been staying at her mom's, I've been shuffling between home, work, and my mother/father in law's place. The building department is heavily involved in the re-build, so we had to get an architect to draft up plans for a new wall. Structural engineers, electricians, masons, the list goes on. I've gotten a serious crash course in general contracting... Thank God we have family in the business to steer me in the right direction. All excavation has been done for the new wall, and the building permit is being issued today. All-in, the work will cost about 20... icing on the cake... insurance denied our claim. Twice. They are crooks. Coming up with all sorts of excuses not to pay the claim. Somehow they are calling it flooding/groundwater related even though there was NO flooding and the 8' hole dug alongside my house has NO groundwater in it.
We are fighting it tooth and nail. We have hired a lawyer, and are suing the insurance company and the engineer who originally inspected the home and wrote "the foundation is sound" in his report. The lawyer thinks we have a case.
To say the least it is very, very, very stressful. Lily helps put it all in perspective, though. Walls can be re-built. Money can be re-earned. The only thing that matters is that my girls are OK -thank God my girls are ok.
In a way, this feels like being in the last mile of a marathon that has suddenly gone up-hill. But the finish line isn't any further away... It's just a steeper finish than originally planned. In two weeks, I will be sitting on my couch with Sara, Lily, and Addie - there will be a nice shiny new basement wall holding up the house, and all will be good in the world. Two weeks. That's all that is left in the marathon. It's just a matter of pacing ourselves and not running out of steam before the finish line. We can see the ribbon... and are SO ready to break through it.
Sara and I are keeping our spirits up. No use getting down in the dumps. LILY IS COMING HOME SOON, AND THAT'S ALL THAT MATTERS!!
Tuesday, September 25, 2012
Monday, September 17, 2012
Day 80-84: Proof of miracles
I sit here in awe, not sure what to write because I'm simply shocked by how much Lily has progressed in the past month! She is, in short, doing marvelously! And she is thriving. AND WE ARE GETTING READY TO TAKE HER HOME! We don't have a date yet, but doctors are saying "soon, within a couple weeks - get everything ready".
Lily will be receiving her pre-discharge exams this week- echocardiogram, blood workup, brain scan, hearing test, and eye exam. Fingers crossed on each! Doctors are also staring to wean her from her diuretic and sodium/iron supplements, preparing her for au naturale living :)
On the pulmonary side, things have also shown remarkable improvement in the past week! Doctors are weaning her, slowly but surely, from the nasal cannula- weaning her from oxygen entirely. Astonishing! Her pressures are now at 1/8 liter... an adult typically gets 2liters of pressure, for comparison's sake. Doctors are warning us that she could come home on oxygen and Pulse-Ox monitor, but at the same time are also saying she might kick the cannula before she leaves. So here's to kicking the cannula!
And - Lily is no longer desat'ing. When she eats, while she sleeps, or while she's awake- her blood oxygen has been in the 97-98% range! Her lungs sound clear, and in short- she is breathing really well. Considering her lung condition, BPD, has been by far her biggest challenge, she is without question winning the battle for her life. And it is awe inspiring to look into her eyes.
She is eating well, and has moved successfully to two whole bottles a day, supplemented by her feeding tube. Tomorrow she may get three bottles, depending on what they decide at rounds. She tires out a little bit during her bottle, but whe. I give her a burp she wakes up and takes the rest. And she is gaining well! She weighs 5lbs 4oz now. More than triple her birthweight, in 10 weeks!
The thought of bringing Lily home is so, so exciting! Addie is excited, Sara is excited, and I am excited. I think even the cats and dog are excited. It's been a wild summer, that's for sure. A summer of stress, a summer of fear, a summer of blood transfusions, blood acidosity, tpn fluids, antibiotics, diuretics, supplements, ventilators, oscillators, incubators, oxymeters, echocardiograms, SiPAPs, CPAPs, pneumatoceles, atelacteses, PDAs, and brain scans.
But most of all, the summer of 2012 was a summer of HOPE!
All the medical jargon, all the fear, all the anguish will one day be a distant memory - but hope lives. Like a delicate flower, HOPE LIVES!
Our hope... our Lily of Hope. She has overcome every odd, defied every statistic. Her survival is more proof than I will ever need that miracles DO happen- every day. In little things, and in big things - miracles exist.
The next time you feel overwhelmed, at the end of your rope, or standing on the edge with a piece of dental floss holding you back from the abyss... remember Lily. Remember Hope. Because miracles exist.
I'm certain of it... I've held one in my arms.
Thank you all, again, for your support and for following our family's journey this summer. The outpouring of love and well-wishes has kept us going through thick and thin. Knowing that we were not alone during the scary times helped tremendously. Thousands of people all over the world have been thinking of lily, praying for her, and sending positive energy her way. I have no doubt in my mind that this has helped her and pushed her along. Your support has been part of what will make this story one with a very, very happy ending. Thank you!
Lily will be receiving her pre-discharge exams this week- echocardiogram, blood workup, brain scan, hearing test, and eye exam. Fingers crossed on each! Doctors are also staring to wean her from her diuretic and sodium/iron supplements, preparing her for au naturale living :)
On the pulmonary side, things have also shown remarkable improvement in the past week! Doctors are weaning her, slowly but surely, from the nasal cannula- weaning her from oxygen entirely. Astonishing! Her pressures are now at 1/8 liter... an adult typically gets 2liters of pressure, for comparison's sake. Doctors are warning us that she could come home on oxygen and Pulse-Ox monitor, but at the same time are also saying she might kick the cannula before she leaves. So here's to kicking the cannula!
And - Lily is no longer desat'ing. When she eats, while she sleeps, or while she's awake- her blood oxygen has been in the 97-98% range! Her lungs sound clear, and in short- she is breathing really well. Considering her lung condition, BPD, has been by far her biggest challenge, she is without question winning the battle for her life. And it is awe inspiring to look into her eyes.
She is eating well, and has moved successfully to two whole bottles a day, supplemented by her feeding tube. Tomorrow she may get three bottles, depending on what they decide at rounds. She tires out a little bit during her bottle, but whe. I give her a burp she wakes up and takes the rest. And she is gaining well! She weighs 5lbs 4oz now. More than triple her birthweight, in 10 weeks!
The thought of bringing Lily home is so, so exciting! Addie is excited, Sara is excited, and I am excited. I think even the cats and dog are excited. It's been a wild summer, that's for sure. A summer of stress, a summer of fear, a summer of blood transfusions, blood acidosity, tpn fluids, antibiotics, diuretics, supplements, ventilators, oscillators, incubators, oxymeters, echocardiograms, SiPAPs, CPAPs, pneumatoceles, atelacteses, PDAs, and brain scans.
But most of all, the summer of 2012 was a summer of HOPE!
All the medical jargon, all the fear, all the anguish will one day be a distant memory - but hope lives. Like a delicate flower, HOPE LIVES!
Our hope... our Lily of Hope. She has overcome every odd, defied every statistic. Her survival is more proof than I will ever need that miracles DO happen- every day. In little things, and in big things - miracles exist.
The next time you feel overwhelmed, at the end of your rope, or standing on the edge with a piece of dental floss holding you back from the abyss... remember Lily. Remember Hope. Because miracles exist.
I'm certain of it... I've held one in my arms.
Thank you all, again, for your support and for following our family's journey this summer. The outpouring of love and well-wishes has kept us going through thick and thin. Knowing that we were not alone during the scary times helped tremendously. Thousands of people all over the world have been thinking of lily, praying for her, and sending positive energy her way. I have no doubt in my mind that this has helped her and pushed her along. Your support has been part of what will make this story one with a very, very happy ending. Thank you!
Thursday, September 13, 2012
Day 73-79: Are we there yet?
Another couple of good days in a row! Lily is still working on moving to two bottles a day, but she's definitely getting better at her suck/swallow/breathe coordination. The thing is, she tires out and falls asleep about half-way through her feeds- it's the most work she's done in her entire life, literally! Both Sara and I have gotten to feed her, which was great! Feeding her is kind of a delicate balancing act... We have to watch for her cues that she needs a breather, or she desat's. Sometimes she will Brady, but she catches herself. Watching her heart rate drop from 160bpm to 90bpm is still very unnerving, though.
Sara and I can't wait to bring her home- we now know she will, indeed, come home! It is an indescribably good feeling. A month ago, we didn't know if we would ever bring her home... what a difference a month can make! We are getting the house ready- new stroller, baby clothes - finally! It looks like this story is going to have a happy ending after all :)
We just need to keep our fingers crossed - docs still won't start talk about going home, but the nurses say things like "get the CPR class out of the way", or "you'll be home before you know it" - such relieving things to hear!
Thanks you all again for the well wishes, prayers and good vibes sent Lily's way... as you can see- they workhe'she is, indeed, a miracle baby!
Sara and I can't wait to bring her home- we now know she will, indeed, come home! It is an indescribably good feeling. A month ago, we didn't know if we would ever bring her home... what a difference a month can make! We are getting the house ready- new stroller, baby clothes - finally! It looks like this story is going to have a happy ending after all :)
We just need to keep our fingers crossed - docs still won't start talk about going home, but the nurses say things like "get the CPR class out of the way", or "you'll be home before you know it" - such relieving things to hear!
Thanks you all again for the well wishes, prayers and good vibes sent Lily's way... as you can see- they workhe'she is, indeed, a miracle baby!
Friday, September 7, 2012
Days 68 - 72: It's been a great week!
It's been a few days since I've posted - things have been going really well! Lily's turnaround since three weeks ago can be described as nothing short of miraculous. It really feels like we're through the thickest part of the forest... so many great updates today! My regrets for not posting more frequently... you've all shared in the hard times, and I want everyone to share in the good times too - indeed, these are good times!! Here are a few pieces of great news:
- Lily is doing well on the nasal cannula! She was weaned down to room air (21% oxygen) for the first time ever, for a day (the 4th), but has since been hovering around 25%. She tends to desat when she feeds, likely due to reflux. Apparently all babies have reflux - doctors may be giving her a mild form of prilosec tomorrow. Lily still has what's called BPD - Bronchopulmonary dysplasia (or CLD, chronic lung desease) - but it is getting much better. There is a small chance she could go home on oxygen. But we could live with that... the joy of having her home would far, far outweigh a few oxygen tanks around the house!
- Lily has started bottle feeding, and is doing a great job at it! It has been amazing watching her learn how to eat. Whereas full term babies are born instinctually knowing how to breast or bottle feed, preemies have to learn. The trick is something we all take for granted... knowing when to alternate between swallowing and breathing. Good news is, Lily's really doing fantastically at it :) Doctors moved her gastro tube from her mouth to her left nostril, so Lily is able to suck on a bottle. She has bottle fed for three days now, once each day. She drank a whole bottle today (45mL) in ten minutes! Tomorrow she will start 2x/day bottles, with the goal of getting to 8 bottle feeds a day (once every 3 hours), at which point they remove the gastro tube - AND WE TAKE HER HOME!!!! Her attending physician wants to take it very slowly, though - adding a bottle every four days or so. (The risk of starting too many bottles too quickly is that she burns calories and loses weight from the work - she's not used to it.)
- Lily was moved to the LEAST critical area of the NICU today! It's great - fewer alarms, they play soft nursery music for the babies, and thankfully there is a MUCH, MUCH MORE COMFORTABLE CHAIR!! My one complaint about the NICU is that the chairs there are mostly 90-degree-angle rolling chairs, very uncomfortable when you're spending hours there, often holding a baby and not moving, every day! In any case, add that to the growing list of things I am thankful for - a more comfortable chair.
- Doctors and nurses, while they still won't say "you'll be home by XX date" - are starting to say things like "do you have a car seat for her?" - which is great to hear! They are talking more about post-NICU life, and it is so, so refreshing to hear. We are learnings how delicate Lily will be when she comes home - she will not be like a newborn baby. She is also coming home right at the beginning of flu season.
That brings me to something else Sara and I have been talking (and worrying a bit) about. At one point, we were thinking that we could have some sort of coming home celebration, or even a christening celebration in fall. Doctors have told us that neither can happen given the fragile state of Lily's immune system. We have to be terribly, terribly careful with her. Doctors have warned us that even a cold can put her back in the hospital, given her lung conditions. I hate to say it but we are basically going to be hermits for the first few months of her life :( That being said, if Lily is doing well, we will be having a massive, tremendous party once spring comes around, and hope you will all join us!
Before I close out this post, I want to once again thank everyone for your support, well-wishes and prayers over the course of the summer. It has been one heck of a ride, and you've all been with us on it - Lily in the conductor's car of the train, just learning how to drive. And by the grace of God, she is learning - and the ride is getting less bumpy every day. Now it feels less like screaming at 90mph across the side of a mountain, and more like a subway ride... just waiting to get to the station. This nicu experience has been many lessons - it started as a lesson in hope, then turned into a lesson in courage... it was a lesson in faith, and then again another lesson in hope - it has since been a lesson amazement, thankfulness, and patience.
OK, so... now on to some pictures!
- Lily is doing well on the nasal cannula! She was weaned down to room air (21% oxygen) for the first time ever, for a day (the 4th), but has since been hovering around 25%. She tends to desat when she feeds, likely due to reflux. Apparently all babies have reflux - doctors may be giving her a mild form of prilosec tomorrow. Lily still has what's called BPD - Bronchopulmonary dysplasia (or CLD, chronic lung desease) - but it is getting much better. There is a small chance she could go home on oxygen. But we could live with that... the joy of having her home would far, far outweigh a few oxygen tanks around the house!
- Lily has started bottle feeding, and is doing a great job at it! It has been amazing watching her learn how to eat. Whereas full term babies are born instinctually knowing how to breast or bottle feed, preemies have to learn. The trick is something we all take for granted... knowing when to alternate between swallowing and breathing. Good news is, Lily's really doing fantastically at it :) Doctors moved her gastro tube from her mouth to her left nostril, so Lily is able to suck on a bottle. She has bottle fed for three days now, once each day. She drank a whole bottle today (45mL) in ten minutes! Tomorrow she will start 2x/day bottles, with the goal of getting to 8 bottle feeds a day (once every 3 hours), at which point they remove the gastro tube - AND WE TAKE HER HOME!!!! Her attending physician wants to take it very slowly, though - adding a bottle every four days or so. (The risk of starting too many bottles too quickly is that she burns calories and loses weight from the work - she's not used to it.)
- Lily was moved to the LEAST critical area of the NICU today! It's great - fewer alarms, they play soft nursery music for the babies, and thankfully there is a MUCH, MUCH MORE COMFORTABLE CHAIR!! My one complaint about the NICU is that the chairs there are mostly 90-degree-angle rolling chairs, very uncomfortable when you're spending hours there, often holding a baby and not moving, every day! In any case, add that to the growing list of things I am thankful for - a more comfortable chair.
- Doctors and nurses, while they still won't say "you'll be home by XX date" - are starting to say things like "do you have a car seat for her?" - which is great to hear! They are talking more about post-NICU life, and it is so, so refreshing to hear. We are learnings how delicate Lily will be when she comes home - she will not be like a newborn baby. She is also coming home right at the beginning of flu season.
That brings me to something else Sara and I have been talking (and worrying a bit) about. At one point, we were thinking that we could have some sort of coming home celebration, or even a christening celebration in fall. Doctors have told us that neither can happen given the fragile state of Lily's immune system. We have to be terribly, terribly careful with her. Doctors have warned us that even a cold can put her back in the hospital, given her lung conditions. I hate to say it but we are basically going to be hermits for the first few months of her life :( That being said, if Lily is doing well, we will be having a massive, tremendous party once spring comes around, and hope you will all join us!
Before I close out this post, I want to once again thank everyone for your support, well-wishes and prayers over the course of the summer. It has been one heck of a ride, and you've all been with us on it - Lily in the conductor's car of the train, just learning how to drive. And by the grace of God, she is learning - and the ride is getting less bumpy every day. Now it feels less like screaming at 90mph across the side of a mountain, and more like a subway ride... just waiting to get to the station. This nicu experience has been many lessons - it started as a lesson in hope, then turned into a lesson in courage... it was a lesson in faith, and then again another lesson in hope - it has since been a lesson amazement, thankfulness, and patience.
OK, so... now on to some pictures!
 |
| Love my girls :) Can't wait to have them all in one room! |
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| My sisters, Annette and Yvonne |
 |
| Sleeping Beauty |
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| My principessa |
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| Thanking the Big Man, perhaps? |
Sunday, September 2, 2012
Days 64-67: Almost there!
Lily has had a great couple of days!
She's no longer in an incubator! Docs moved her to a bassinet on Thursday because Lily's been doing well holding her own temperature. So, out with the old, in with the new!
She is still doing well on the nasal cannula, hovering around 25% oxygen and liter of pressure. She has had only one apnea/brady since august 23rd, showing real improvement in her lungs!
Docs will probably try bottle feeds with lily this week. Bottle feeding is the last remaining hurdle before going home- we could be there in as soon as three weeks! The three big "pillar" requirements are unassisted breathing (cannula), holding temperature, and bottle feeds- two of three are done! Lily is now measuring 4pounds 7ounces, gaining between 10 and 50 grams every night. Just what we want to see!
The "almost there" feeling is getting quite palpable- it's been a long 10 weeks, but the light at the end of the tunnel is getting bigger and bigger! The doctors and nurses her call lily the "rock star", since she her recovery has been so amazing these past few weeks. She fought back from the brink, and she's going to fight her way right back home, into our arms!
She's no longer in an incubator! Docs moved her to a bassinet on Thursday because Lily's been doing well holding her own temperature. So, out with the old, in with the new!
She is still doing well on the nasal cannula, hovering around 25% oxygen and liter of pressure. She has had only one apnea/brady since august 23rd, showing real improvement in her lungs!
Docs will probably try bottle feeds with lily this week. Bottle feeding is the last remaining hurdle before going home- we could be there in as soon as three weeks! The three big "pillar" requirements are unassisted breathing (cannula), holding temperature, and bottle feeds- two of three are done! Lily is now measuring 4pounds 7ounces, gaining between 10 and 50 grams every night. Just what we want to see!
The "almost there" feeling is getting quite palpable- it's been a long 10 weeks, but the light at the end of the tunnel is getting bigger and bigger! The doctors and nurses her call lily the "rock star", since she her recovery has been so amazing these past few weeks. She fought back from the brink, and she's going to fight her way right back home, into our arms!
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