It's true ... Cailin is being discharged on Friday...this Friday!
Since our last post, things have just been going so well. Caili has continued to eat all of her feedings by mouth and gained weight in the process (it's been 2 weeks now). And, she has tolerated a lot of weaning of her oxygen support requirements. Actually, as of yesterday, (Tuesday) she would technically be ready to go home. But, the doctors want to give her until Friday to be safe and see if they can wean her oxygen support a bit further. Even if they can't wean her further, that won't prevent her from going home. Really, she just needs to pass the "car seat test" (sit in the car seat for an hour without respiratory distress) and continue to do as well as she has been and she can go home on Friday!
Caili will go home with several prescriptions, a monitor and oxygen. According to her pulmonologist, she may need the oxygen support for the next 4-6 months. But, we feel so fortunate to have only this minor inconvenience given all that she has been through. Tomorrow, we’ll have a large oxygen tank and lots of long tubing delivered to use while at home. And, they’ll provide us with several portable tanks for trips out of the house, like to the pediatrician's office or to walk Ellie!
I'm sure you can only imagine how elated Tim and I are to be finally taking Caili home. Of course, we're a bit nervous as well. But, we feel ready and excited to be at home, together as a family with Caili, Ellie and Kotie (our cat)! And, thankfully both my mom and Tim's mom are retired so we'll have some extra help for the first few weeks.
On a different note, Tim and I have been so touched by all of you who that have been following Caili's journey. On a weekly basis we would get calls or emails about our posts or requests to update the blog. It was also a weekly occurrence to learn of someone else who started reading the blog or added Caili to their prayers or even their church's prayer list. Friends, friends of friends, parents of a friend, co-workers of friends, etc. It's been amazing. Some of the stories we could tell would amaze you. While we can't see exactly who has been accessing her blog, we can see that it has been accessed by over 1,000 "unique visitors" from countries all around the world. We often get emails from people saying, "you may not remember me," or "we haven't met but...". Again, amazing and so very touching to us as well. We created the blog to keep our family and friends updated. But, we had no idea it would mean so much to us in return. Your comments and personal emails have really kept us going. And, we can't wait to tell Caili about it someday soon.
To help Caili know who was following her, we created (sorry...a little late) a guestbook. We were hoping each of you could sign it to say hello, explain how you’re connected to Caili or Tim and me, and post any thoughts or wishes you may have.
You can choose to post a public or private comment (there is a “private” checkbox”). But, we should mention that in order to prevent spammers from clogging up the guestbook we have to approve all posts, so your message may not show up for some time after you send it. The guestbook link can be found on the right menu, or, for those reading this via e-mail, you can view the guestbook here, and sign it here. Incidentally, we’ve also posted a new album of pictures, which you can see here.
And now, we need to get packing! Thank you again for all of your friendship, kindness and support. Your emails, comments, phone calls, acts of kindness and just knowing you cared helped us in more ways than words can describe.
Wish us luck and we’ll update you next FROM HOME!!
Wednesday, February 27, 2008
Saturday, February 16, 2008
Eating, Growing...Soaring
Caili is soaring. Lauren and I are both reticent to speak or write about it because it feels too good to be true, and we live in fear of another (always possible) setback. However, one of the many things that this experience has made clear is how important it is to enjoy the moment, and this moment is good. Really, really good.
First an update on the impedance test—the main test for which we came to DuPont. As Lauren mentioned, the test is designed to measure both acid and non-acid reflux, and was hoped to provide a definitive answer on the question of aspiration, which the previous testing suggested wasn’t an issue. Caili underwent the 24 hour test--which consisted of a second tube (in addition to her feeding tube) routed to her stomach with some sort of wire and electrodes that measure the pressures in her esophagus which are in turn recorded by a little monitor in her crib. Unfortunately, the monitor had some sort of issue that prevented the results from being read. It's been sent to Phoenix for a recovery attempt, but we're guessing results will never be known.
On the day before the impedance test, we were allowed to feed Caili a small amount of milk by bottle, which she loved. When the test was over on Tuesday, they let me try giving her a bottle with her entire feed, which she joyously ate in full. Lauren got to do another feed by bottle that night, and again Caili loved it. Watching her eat is actually amazing; the act of eating is extremely hard work for her given her sick lungs, and she has to periodically stop and catch her breath. She pants like a puppy-dog during this "catch-up" breathing which is cute, frightening, and just a little sad--eating shouldn't be so much work!
Early Wednesday morning, Caili took charge as she has done countless times before; she decided that she'd had enough of her feeding tube, and pulled it out herself. Given how well she had handled the feedings to that point, the doctor decided she could eat all of her feeds orally and changed her feeding orders to "ad-lib," meaning she could be given a bottle whenever she seemed to want one. And the decision was made to go without the feeding tube until it was needed--if it was needed.
Even though it's been tough work, since Wednesday AM, little Caili has eaten every ounce of her food herself, which is a joy for all of us. She's even been able to gain weight while doing so; as of this morning she's just over 7 pounds, 5 ounces. The feeding tube has not been replaced, and she's doing so well that at this point they don't intend to repeat the impedance test even if the results cannot be recovered.
Of course the remaining issue is the level of breathing support she continues to require, which is beyond a level at which she could leave the hospital. They're slowly weaning, and the hope is that at some point in the not too distant future she'll get to the point where coming home will become an option. She was nearly at that level of support in early January before the last setback, so we're optimistic that she can get there again--maybe even before spring!
First an update on the impedance test—the main test for which we came to DuPont. As Lauren mentioned, the test is designed to measure both acid and non-acid reflux, and was hoped to provide a definitive answer on the question of aspiration, which the previous testing suggested wasn’t an issue. Caili underwent the 24 hour test--which consisted of a second tube (in addition to her feeding tube) routed to her stomach with some sort of wire and electrodes that measure the pressures in her esophagus which are in turn recorded by a little monitor in her crib. Unfortunately, the monitor had some sort of issue that prevented the results from being read. It's been sent to Phoenix for a recovery attempt, but we're guessing results will never be known.
On the day before the impedance test, we were allowed to feed Caili a small amount of milk by bottle, which she loved. When the test was over on Tuesday, they let me try giving her a bottle with her entire feed, which she joyously ate in full. Lauren got to do another feed by bottle that night, and again Caili loved it. Watching her eat is actually amazing; the act of eating is extremely hard work for her given her sick lungs, and she has to periodically stop and catch her breath. She pants like a puppy-dog during this "catch-up" breathing which is cute, frightening, and just a little sad--eating shouldn't be so much work!
Early Wednesday morning, Caili took charge as she has done countless times before; she decided that she'd had enough of her feeding tube, and pulled it out herself. Given how well she had handled the feedings to that point, the doctor decided she could eat all of her feeds orally and changed her feeding orders to "ad-lib," meaning she could be given a bottle whenever she seemed to want one. And the decision was made to go without the feeding tube until it was needed--if it was needed.
Even though it's been tough work, since Wednesday AM, little Caili has eaten every ounce of her food herself, which is a joy for all of us. She's even been able to gain weight while doing so; as of this morning she's just over 7 pounds, 5 ounces. The feeding tube has not been replaced, and she's doing so well that at this point they don't intend to repeat the impedance test even if the results cannot be recovered.
Of course the remaining issue is the level of breathing support she continues to require, which is beyond a level at which she could leave the hospital. They're slowly weaning, and the hope is that at some point in the not too distant future she'll get to the point where coming home will become an option. She was nearly at that level of support in early January before the last setback, so we're optimistic that she can get there again--maybe even before spring!
Friday, February 8, 2008
Settling In at DuPont
While my first night with Caili was wonderful in many ways, it was still a tough night for both of us due to those awful long prongs DuPont uses for the CPAP. They really upset Caili the first time they went in and unfortunately every four hours they had to be removed to be suctioned and then reinserted. It was a grueling night for both of us.
But Tuesday morning brought great news. Caili had convinced the doctor and nurses that she would not be pleasant to deal with if they kept putting those long prongs in her nose. So the doctor recommended trying a similar system to what she was on at Jefferson. While more comfortable (just the small cannula) it is less support than CPAP. Thankfully, Caili was able to handle it.
As the week progressed, Caili continued to allow them to wean some of her support and was really settling in. And why not...her new room is just great. Because it is a private room, we can control the amount of noise, light and stimulus. It has really seemed to make a difference in her overall disposition. She is already calmer and more tolerant. As for me, I am thrilled to report that I too have really settled in. Because it is a private room, there are so many more options for me while I am with her. As you read from Tim's last post, our room has a pull out couch that I can sleep on at night or nap on during the day when Caili sleeps (she doesn't sleep much at night). It has a land line phone that I can use (or my cell) to make calls, there is wireless Internet access (I’m watching her sleep while I type this post), a flat screen TV and storage space for my personal items (I saved a few drawers for Caili too). So while my focus is attending to her needs, when she sleeps, I too can now sleep or catch up on things like email and phone calls. In addition to all of this, because I am a nursing mom, they feed me breakfast, lunch and dinner for free in the hospital's cafeteria. Or, Tim and I can eat for free at the wonderfully accommodating Ronald McDonald house down the road.
As for the testing and answers we came here for, three of the four tests were done this past Thursday. And, while it was a bit scary since they had to put Caili under and put her on the ventilator, we were thrilled with the end result and how quickly she came back off the vent (once again, Caili extubated herself). It seems that Caili does not have any airway obstructions and no major irritation in her esophagus or small intestine (indicating reflux). The tests did confirm that Caili just has very immature and very damaged lungs (from the early weeks of being on the ventilator to keep her alive). And while that may not seem like good news, it actually is to us. It means that with time and good nutrition, Caili will grow new lung tissue and slowly get stronger. That time may be months but she is well worth the wait. And, given this news, we are so happy we have these new accommodations to make that time pass more quickly.
We have one more test on Monday to finally rule out non-acid reflux. It is a 24 hour test and by Wednesday, we should know the results. If the test comes back negative, the plan is to slowly start feeding Caili by mouth once again. I know that this will bring Caili a lot of pleasure and only help with her overall satisfaction and ability to sleep more soundly.The only downside of our move to DuPont is that Tim has been running himself ragged driving from work to home to take care of our dog Ellie, then to the hospital and back home again each night. So, to make things easier for us, we decided to send Ellie to Tim's sister’s house for a while. She has been so good for us throughout this past year and we will miss her terribly but not having her at home will be so much easier for us (especially Tim). It will allow us all more time together since Tim will be able to stay in Delaware, either here with Caili or at the Ronald McDonald house and commute from here to work. I plan to go home once a week to pet the cat (poor Kotie).
While we have no end in sight, we are so thankful that Caili is currently doing well, that the tests didn't show anything which would require major surgery and that we are in a private room where we can all feel more like we are at home.
We posted some new pictures and you can find them in the top photo album on her page. Click on the mini picture to see them in full size. You won't believe how big she is getting. She’s now just shy of 7 pounds. Her smile gives us a kind of happiness we’ve never experienced. It’s worth every bit of heartache we’ve been through.
Thank you for all of your well wishes and support. Hopefully we’ll have some more good news next week.
But Tuesday morning brought great news. Caili had convinced the doctor and nurses that she would not be pleasant to deal with if they kept putting those long prongs in her nose. So the doctor recommended trying a similar system to what she was on at Jefferson. While more comfortable (just the small cannula) it is less support than CPAP. Thankfully, Caili was able to handle it.
As the week progressed, Caili continued to allow them to wean some of her support and was really settling in. And why not...her new room is just great. Because it is a private room, we can control the amount of noise, light and stimulus. It has really seemed to make a difference in her overall disposition. She is already calmer and more tolerant. As for me, I am thrilled to report that I too have really settled in. Because it is a private room, there are so many more options for me while I am with her. As you read from Tim's last post, our room has a pull out couch that I can sleep on at night or nap on during the day when Caili sleeps (she doesn't sleep much at night). It has a land line phone that I can use (or my cell) to make calls, there is wireless Internet access (I’m watching her sleep while I type this post), a flat screen TV and storage space for my personal items (I saved a few drawers for Caili too). So while my focus is attending to her needs, when she sleeps, I too can now sleep or catch up on things like email and phone calls. In addition to all of this, because I am a nursing mom, they feed me breakfast, lunch and dinner for free in the hospital's cafeteria. Or, Tim and I can eat for free at the wonderfully accommodating Ronald McDonald house down the road.
As for the testing and answers we came here for, three of the four tests were done this past Thursday. And, while it was a bit scary since they had to put Caili under and put her on the ventilator, we were thrilled with the end result and how quickly she came back off the vent (once again, Caili extubated herself). It seems that Caili does not have any airway obstructions and no major irritation in her esophagus or small intestine (indicating reflux). The tests did confirm that Caili just has very immature and very damaged lungs (from the early weeks of being on the ventilator to keep her alive). And while that may not seem like good news, it actually is to us. It means that with time and good nutrition, Caili will grow new lung tissue and slowly get stronger. That time may be months but she is well worth the wait. And, given this news, we are so happy we have these new accommodations to make that time pass more quickly.
We have one more test on Monday to finally rule out non-acid reflux. It is a 24 hour test and by Wednesday, we should know the results. If the test comes back negative, the plan is to slowly start feeding Caili by mouth once again. I know that this will bring Caili a lot of pleasure and only help with her overall satisfaction and ability to sleep more soundly.The only downside of our move to DuPont is that Tim has been running himself ragged driving from work to home to take care of our dog Ellie, then to the hospital and back home again each night. So, to make things easier for us, we decided to send Ellie to Tim's sister’s house for a while. She has been so good for us throughout this past year and we will miss her terribly but not having her at home will be so much easier for us (especially Tim). It will allow us all more time together since Tim will be able to stay in Delaware, either here with Caili or at the Ronald McDonald house and commute from here to work. I plan to go home once a week to pet the cat (poor Kotie).
While we have no end in sight, we are so thankful that Caili is currently doing well, that the tests didn't show anything which would require major surgery and that we are in a private room where we can all feel more like we are at home.
We posted some new pictures and you can find them in the top photo album on her page. Click on the mini picture to see them in full size. You won't believe how big she is getting. She’s now just shy of 7 pounds. Her smile gives us a kind of happiness we’ve never experienced. It’s worth every bit of heartache we’ve been through.
Thank you for all of your well wishes and support. Hopefully we’ll have some more good news next week.
Monday, February 4, 2008
First Night With Mommy
I'm thrilled to report that Caili's trip went very well. It was delayed until this afternoon (Monday), but she was all settled into her beautiful new private room by about 6 PM. DuPont's NICU is brand new--the official grand opening was last Wednesday. Caili's room is huge, and of course everything is new. Just as with Jefferson, the people there all seem to be wonderful. Of course we've gone from being long-timers that know pretty much everyone to being the new kids on the block that know no one, but everyone has been very welcoming. We just feel a little out of sorts.
Caili seems to have weathered the trip extremely well. They've already been able to wean some of her medication, and while the new CPAP equipment--long prongs pushed deep into her nose--will take some getting used to for all of us, overall she seems to like her new digs.
And Mommy loves one aspect in particular; as it turns out, the parent's bathroom at the NICU just opened, and thanks to that, they now officially allow one parent to spend the night. Caili's room has a fold-out couch, so Lauren is at this very moment spending her very first night ever with Caili (not counting the 24 weeks of gestation of course!). I'm thrilled for them both, and sorry to be missing it.
There is no word yet on when all the tests will begin, but we're very hopeful they'll be later this week, and that soon we'll have some answers that will help us to get back on track to bringing Caili home.
As always, thank you all for your ever-continuing support and prayers!
Caili seems to have weathered the trip extremely well. They've already been able to wean some of her medication, and while the new CPAP equipment--long prongs pushed deep into her nose--will take some getting used to for all of us, overall she seems to like her new digs.
And Mommy loves one aspect in particular; as it turns out, the parent's bathroom at the NICU just opened, and thanks to that, they now officially allow one parent to spend the night. Caili's room has a fold-out couch, so Lauren is at this very moment spending her very first night ever with Caili (not counting the 24 weeks of gestation of course!). I'm thrilled for them both, and sorry to be missing it.
There is no word yet on when all the tests will begin, but we're very hopeful they'll be later this week, and that soon we'll have some answers that will help us to get back on track to bringing Caili home.
As always, thank you all for your ever-continuing support and prayers!
Slipping Backward, Moving Forward
It’s been a tough week. Last Sunday Caili’s breathing began to get more labored, to the point that doctors were beginning to fear that she was nearing the end of her energy reserve. At that point she was still on the high-flow nasal cannula, but we continued to fear another backward slide. Last Monday they reverted back to CPAP, which Caili hates due to the mask she has to wear, and the pressure of the prongs that are strapped against her nose. It’s far from comfortable.
Because of Caili’s age and her pulmonary hypertension, it’s more critical than ever that her blood stay well oxygenated. They used to accept levels in the high 80’s or low 90’s, fine for premature infant not yet supposed to be out in the world (we’re told that the mother has used much of the oxygen in the blood that reaches a baby in utero, and thus premature infants are used to lower saturations), but that’s no longer acceptable now that she’s essentially a 5 week old. So, Caili’s target saturation is now 95%. Note that a healthy term infant as well as an adult saturates at or near 100% all day long.
So, when Caili was switched back to CPAP on Monday all was good for awhile. She was saturating well, and her breathing was more relaxed. But on Tuesday evening Caili once again came unraveled. Now matter how much oxygen they gave her, she couldn’t reach her target saturation. As I headed to the hospital, the doctors asked Lauren to leave Caili’s room so they could intubate her. We were utterly devastated. Going back on the vent at this late stage seemed impossible to imagine. We were supposed to be on the track home by now.
I met Lauren in the lounge, and we began to prepare ourselves to see our daughter intubated yet again. Luckily, our preparations were unnecessary. Caili’s doctor sought us out to deliver good news; Caili’s nurse had found a position that seemed to be working for her, and she was still on CPAP. She was breathing 100% oxygen (which in itself is not a good thing), but her oxygen saturation was sitting at 95% as it needed to be. She had avoided intubation, at least for now.
We sat beside her crib as she slept, entranced by her monitor, doing our best to will the oxygen saturation to stay at 95%, or, dare we hope, rise higher. We left at 10 feeling that intubation was inevitable. We’d been through this before; in December we had left for home with her on CPAP but teetering on the edge of intubation, and that night had ended with her on the vent. We expected a call in the middle of the night reporting her intubation. There was no call. Our ritual call immediately upon awakening on Wednesday morning revealed that she was still hanging in on CPAP, although she was still on the ragged edge. Our little girl is determined. Later that morning they decided that the cause for this extreme downward slide was potentially a bad reaction to a drug they had administered to help with her pulmonary hypertension, and the drug was discontinued. She continued to hang in there.
By Wednesday night she was improving. They were able to slowly reduce the amount of oxygen she was breathing. The specter of intubation vacated, but our stress remained. The amount of oxygen she was breathing was still too high, she was still on CPAP, and answers on why she had slipped backward from mid January were still not to be had. Her pulmonary hypertension alone doesn’t explain this backwards slide. She doesn’t seem to have a cold, which had been our fear. On Thursday morning the doctors tried another test that might show aspiration—still the leading theory of the cause of her difficulties. The test showed nothing abnormal. It was time to regroup.
The pulmonary specialist came in to see her again on Thursday afternoon. He recommended another test that would more definitively determine the level of her reflux. However, this test is not performed at Jefferson. She would need to make a trip south—to the DuPont Children’s Hospital in Wilmington, Delaware. The other doctors agreed that this was the best next step—the best way to hopefully get answers, and get back on a track that would lead to taking Caili home.
The process moved quickly, and on Saturday we learned that Caili will leave Jefferson for the first time on this morning, via ambulance, and will travel to Wilmington. As we’ve seen when they’ve taken her out of her room for various tests, moving her is no easy task—it requires a ton of equipment and at least three people to accompany her. Seeing her moved is a stark reminder of how fragile she still is. We are more than a little anxious about a drive 45 minutes south.
Also, we are extremely sad to leave Jefferson, which has truly become our home away from home. The doctors, nurses, respiratory therapists and the many other people that have been involved in her care have been absolutely amazing. They have given our daughter life, and provided us with hope, console, inspiration and friendship. From the moment that we first saw a baby that we knew go home after a long stay in the NICU, we dreamed of that walk down the hall with Caili in a stroller, with the doctors and nurses responsible for delivering that joyous moment sadly but excitedly congratulating us and wishing us well. Leaving in an ambulance is not what we imagined. We’re sorry that all those responsible for her progress to date may not get to participate in that day when we finally do take her home.
It is possible that Caili will go back to Jefferson after the testing is complete, but at this point it seems more likely that the remainder of her hospitalization will be at DuPont. And that certainly isn’t bad—DuPont’s NICU is apparently brand spanking new, all the rooms are private and parents can visit 24 hours a day. No longer will the end of visiting hours force us to leave Caili crying, or worse yet struggling to breathe.
I do worry about Lauren—I fear she’ll never leave Caili’s side and will try to live without sleep. But she will be able to sleep close by—she’s planning to live in the Ronald McDonald house that’s across the street from the hospital. Unfortunately I’ll have less time with Lauren and Caili—Wilmington is at least twice as far away from our house as is Jefferson. But we need answers, and everyone is hopeful that the tests they can run at DuPont will provide them. Hopefully this next step in Caili’s journey will be a short stint before she finally comes home to us.
If you would, think of Caili this morning on her first excursion, and join us in praying that this will be a positive step toward bringing our little angel home.
Because of Caili’s age and her pulmonary hypertension, it’s more critical than ever that her blood stay well oxygenated. They used to accept levels in the high 80’s or low 90’s, fine for premature infant not yet supposed to be out in the world (we’re told that the mother has used much of the oxygen in the blood that reaches a baby in utero, and thus premature infants are used to lower saturations), but that’s no longer acceptable now that she’s essentially a 5 week old. So, Caili’s target saturation is now 95%. Note that a healthy term infant as well as an adult saturates at or near 100% all day long.
So, when Caili was switched back to CPAP on Monday all was good for awhile. She was saturating well, and her breathing was more relaxed. But on Tuesday evening Caili once again came unraveled. Now matter how much oxygen they gave her, she couldn’t reach her target saturation. As I headed to the hospital, the doctors asked Lauren to leave Caili’s room so they could intubate her. We were utterly devastated. Going back on the vent at this late stage seemed impossible to imagine. We were supposed to be on the track home by now.
I met Lauren in the lounge, and we began to prepare ourselves to see our daughter intubated yet again. Luckily, our preparations were unnecessary. Caili’s doctor sought us out to deliver good news; Caili’s nurse had found a position that seemed to be working for her, and she was still on CPAP. She was breathing 100% oxygen (which in itself is not a good thing), but her oxygen saturation was sitting at 95% as it needed to be. She had avoided intubation, at least for now.
We sat beside her crib as she slept, entranced by her monitor, doing our best to will the oxygen saturation to stay at 95%, or, dare we hope, rise higher. We left at 10 feeling that intubation was inevitable. We’d been through this before; in December we had left for home with her on CPAP but teetering on the edge of intubation, and that night had ended with her on the vent. We expected a call in the middle of the night reporting her intubation. There was no call. Our ritual call immediately upon awakening on Wednesday morning revealed that she was still hanging in on CPAP, although she was still on the ragged edge. Our little girl is determined. Later that morning they decided that the cause for this extreme downward slide was potentially a bad reaction to a drug they had administered to help with her pulmonary hypertension, and the drug was discontinued. She continued to hang in there.
By Wednesday night she was improving. They were able to slowly reduce the amount of oxygen she was breathing. The specter of intubation vacated, but our stress remained. The amount of oxygen she was breathing was still too high, she was still on CPAP, and answers on why she had slipped backward from mid January were still not to be had. Her pulmonary hypertension alone doesn’t explain this backwards slide. She doesn’t seem to have a cold, which had been our fear. On Thursday morning the doctors tried another test that might show aspiration—still the leading theory of the cause of her difficulties. The test showed nothing abnormal. It was time to regroup.
The pulmonary specialist came in to see her again on Thursday afternoon. He recommended another test that would more definitively determine the level of her reflux. However, this test is not performed at Jefferson. She would need to make a trip south—to the DuPont Children’s Hospital in Wilmington, Delaware. The other doctors agreed that this was the best next step—the best way to hopefully get answers, and get back on a track that would lead to taking Caili home.
The process moved quickly, and on Saturday we learned that Caili will leave Jefferson for the first time on this morning, via ambulance, and will travel to Wilmington. As we’ve seen when they’ve taken her out of her room for various tests, moving her is no easy task—it requires a ton of equipment and at least three people to accompany her. Seeing her moved is a stark reminder of how fragile she still is. We are more than a little anxious about a drive 45 minutes south.
Also, we are extremely sad to leave Jefferson, which has truly become our home away from home. The doctors, nurses, respiratory therapists and the many other people that have been involved in her care have been absolutely amazing. They have given our daughter life, and provided us with hope, console, inspiration and friendship. From the moment that we first saw a baby that we knew go home after a long stay in the NICU, we dreamed of that walk down the hall with Caili in a stroller, with the doctors and nurses responsible for delivering that joyous moment sadly but excitedly congratulating us and wishing us well. Leaving in an ambulance is not what we imagined. We’re sorry that all those responsible for her progress to date may not get to participate in that day when we finally do take her home.
It is possible that Caili will go back to Jefferson after the testing is complete, but at this point it seems more likely that the remainder of her hospitalization will be at DuPont. And that certainly isn’t bad—DuPont’s NICU is apparently brand spanking new, all the rooms are private and parents can visit 24 hours a day. No longer will the end of visiting hours force us to leave Caili crying, or worse yet struggling to breathe.
I do worry about Lauren—I fear she’ll never leave Caili’s side and will try to live without sleep. But she will be able to sleep close by—she’s planning to live in the Ronald McDonald house that’s across the street from the hospital. Unfortunately I’ll have less time with Lauren and Caili—Wilmington is at least twice as far away from our house as is Jefferson. But we need answers, and everyone is hopeful that the tests they can run at DuPont will provide them. Hopefully this next step in Caili’s journey will be a short stint before she finally comes home to us.
If you would, think of Caili this morning on her first excursion, and join us in praying that this will be a positive step toward bringing our little angel home.
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