Barring any major changes, Susannah gets to come home this week! However, there are some stipulations. We will be bringing her home on a monitor to keep an eye on her breathing and heart rate. The monitor will sound an alarm if things drop to dangerous levels. The staff is comfortable sending her home, and we trust their judgment because they are awesome.
That said, in order to get the monitor, we have to stay overnight in the hospital with Susannah and her new, fancy equipment to be sure we know how to operate it correctly. It will be my version of camping!!! Luckily, Geedee is here to hang with Charlie while we spend one more night in different places. Thank you, Geedee!!!!! Wednesday morning, if all goes as planned, we'll get to bring Susannah home to her brothers and work on having some sense of "normalcy" again.
Thank you again for all the thoughts, prayers, food, and favors. We are so, so appreciative!!!
Love from all of us to all of you....
Monday, August 29, 2011
Saturday, August 27, 2011
Roller Coaster
One day we'll look back on this past week and laugh! When we brought William home last Friday, we thought sister Susannah would follow early this week. She had other plans, however, and is still hanging out with our friends at Memorial.
Last weekend she started having more dips in her heart rate that progressively got more significant and more frequent. After running more tests this week (all normal), the experts were thinking that acid reflux may be to blame. We started her on a particular formula fortified with rice starch that becomes heavier when it hits the belly. That has been staying down and there have been no unexplained incidents with her heart and breathing rates since! With each unexplained incident, however, there is a five day countdown that begins; she needs to have five days incident-free before it is safe to bring her home. Right now, that day will be Tuesday if she continues on this streak! For now, we're keeping her on this special formula with the hopes of resuming breastmilk when she gets a little older and her stomach muscles mature.
Meanwhile, William has had a very smooth transition to life in our home. Here he is during a thoughtful snooze:
We took him to the pediatrician this week, and he's already up to 6 pounds, 6 ounces. That's nearly an ounce a day of weight gain!
Lots of you kind folks have been asking how they can help. Right now, we'd be so happy and grateful to receive any meal you're willing to share. Our friend Mark McCrary has graciously set up a meal train; you can sign up here:
http://www.mealtrain.com/?id=mkxud44lnywt
Tons and tons of love and gratitude from us to you....
Sunday, August 21, 2011
Homecoming #1
William Lawrence Crump is now a resident in our home! Late last week we got the news that he would be ready to go home after all his antibiotics were complete. Friday afternoon, we left the hospital with "Big Will" and have ALL loved snuggling with him since.
Charlie had not yet met William, so we weren't sure what to expect there. Charlie impressed us, though!
He is very curious, but very sweet, and has been asking lots of questions about the "baby." Yes, that is the sound of us melting...
Baby Susannah is still hanging out in the NICU at Memorial. She has passed her hearing and car seat tests, and her last dose of antibiotics is tonight (Sunday) at 10PM. Her feeding tube was removed last night. So far she's doing really well without it, so that's definitely a giant step forward. We will wait to get the doctor's report in the morning, but it looks like she should be home by the weekend. Our home doesn't feel complete without her here, so we are looking forward to the day we can all be in one place.
I know I say it frequently, but we are truly grateful for all the thoughts and prayers. They mean so much to all of us!!!
Charlie had not yet met William, so we weren't sure what to expect there. Charlie impressed us, though!
He is very curious, but very sweet, and has been asking lots of questions about the "baby." Yes, that is the sound of us melting...
Baby Susannah is still hanging out in the NICU at Memorial. She has passed her hearing and car seat tests, and her last dose of antibiotics is tonight (Sunday) at 10PM. Her feeding tube was removed last night. So far she's doing really well without it, so that's definitely a giant step forward. We will wait to get the doctor's report in the morning, but it looks like she should be home by the weekend. Our home doesn't feel complete without her here, so we are looking forward to the day we can all be in one place.
I know I say it frequently, but we are truly grateful for all the thoughts and prayers. They mean so much to all of us!!!
Tuesday, August 16, 2011
Birthdays
Yesterday, Charlie turned two years old. Unfortunately, a celebration of epic proportions was just not possible this year. Fortunately, he probably won't remember that we didn't throw a party. However, we did have pizza and cupcakes:
The big guy's brother and sister are doing well also. Susannah is now taking two bottles daily, and is up to 4 lbs, 4 oz. She is getting progressively more feisty! Check out this picture of her after she squirmed her way into a comfortable position:
Her last dose of antibiotics is on the 21st, so we hope to have a better idea of when she will be coming home after that.
Will has graduated to every other feeding as a bottle, potentially every two out of three. He is up to 5 lbs, 14 oz and is looking really big these days. Here he is immediately following lunch:
His last dose of meds is on the 19th.
Keep them in your thoughts and prayers that there are no further steps backward, only steps forward for our little ones. We are so grateful for our many blessings, including all of you.
The big guy's brother and sister are doing well also. Susannah is now taking two bottles daily, and is up to 4 lbs, 4 oz. She is getting progressively more feisty! Check out this picture of her after she squirmed her way into a comfortable position:
Her last dose of antibiotics is on the 21st, so we hope to have a better idea of when she will be coming home after that.
Will has graduated to every other feeding as a bottle, potentially every two out of three. He is up to 5 lbs, 14 oz and is looking really big these days. Here he is immediately following lunch:
His last dose of meds is on the 19th.
Keep them in your thoughts and prayers that there are no further steps backward, only steps forward for our little ones. We are so grateful for our many blessings, including all of you.
Saturday, August 13, 2011
Pounds
Here we are again at a stage of stability and waiting, a stage we are thankful for. Both babies are feeling much better and tolerating their feedings well. Will has finally graduated to a third bottle each day, and Susannah is getting better at hers. Since they are eating so well, they are putting on weight. In fact, (drum roll please) Will now weighs 5 pounds, 9 ounces, and Susannah weighs FOUR pounds, one ounce!
Right now, we are waiting on both of them to finish their rounds of antibiotics to be sure we took care of the infection and for them to eat without the assistance of a tube for all their feedings. William finishes his antibiotics on the 18th, and Susannah the following Monday.
Big Brother Charlie turns two on Monday, and we've seen him make some huge strides of his own in the last couple of weeks. For those of you that don't know, Charlie had a stroke sometime around his birth. He's had a weakness on his left side that we've been working on with multiple therapists, and we're fortunate that there doesn't seem to be any cognitive damage. Because of his weakness, he didn't crawl until May of this year, and he doesn't stand on his own or walk yet. However, this past week, he has started pulling up to standing, and has gotten very fast at it! Here he is yesterday after he pulled up to the couch and cruised his way over to me:
His bed head makes our day every day!!!
More soon, and thank you again for all the love, prayers, and thoughts sent our way.
Right now, we are waiting on both of them to finish their rounds of antibiotics to be sure we took care of the infection and for them to eat without the assistance of a tube for all their feedings. William finishes his antibiotics on the 18th, and Susannah the following Monday.
Big Brother Charlie turns two on Monday, and we've seen him make some huge strides of his own in the last couple of weeks. For those of you that don't know, Charlie had a stroke sometime around his birth. He's had a weakness on his left side that we've been working on with multiple therapists, and we're fortunate that there doesn't seem to be any cognitive damage. Because of his weakness, he didn't crawl until May of this year, and he doesn't stand on his own or walk yet. However, this past week, he has started pulling up to standing, and has gotten very fast at it! Here he is yesterday after he pulled up to the couch and cruised his way over to me:
His bed head makes our day every day!!!
More soon, and thank you again for all the love, prayers, and thoughts sent our way.
Thursday, August 11, 2011
Four Weeks
The babies are four weeks old today. It is hard to believe that much time has passed already. Over the past couple of days alone, we've seen lots of changes:
1. Will came off the ventilator yesterday! He graduated to a nasal cannula, but decided to repeatedly pull that out, so they took that off too because he was breathing fine. So far, he has not tested positive for VRE, so he's on the regular antibiotics and is responding to those. His color is much improved, and he spent a lot of time yesterday looking around.
2. Susannah is getting more and more energetic with each passing day. She was causing a little trouble yesterday too because she kept pulling out her feeding tube. I can tell by looking at her that she feels much, much better and we just pray for more improvement.
Both babies have been given the OK to start taking bottles again, 2 daily for Will and one for Susannah, so I'll keep you updated on their progress.
More good news: We don't have to move hospitals! The eye exam that was required for babies born under 32 weeks gestation has updated guidelines, and it is now only required for 30 weeks and under. Since our babies were born at 31, we're not required to get the exam and we don't have to move! HOORAY!!!
Keep the prayers coming...THEY ARE WORKING!!! We are so, so grateful for everything! Love from all five of us...
Tuesday, August 9, 2011
Grounded
I've officially grounded the kids for a minimum of a month, to be served at age 16. It has been an eventful couple of days.
Yesterday, we learned that Susannah is growing a second type of bacteria in her urinary tract. The bad news is that this bacteria is resistant to the antibiotic normally used to treat the babies (VRE, for the medical professionals out there). The good news is that there is another antibiotic reserved for treating it, and that's what she's getting. However, since it is a resistant bug, she was placed in contact isolation. This means that the curtains around her are pulled most of the way at all times, and a plastic gown and gloves must be worn when you are in the area. That said, she does seem to be responding to the new meds, and the incidences of apnea are decreasing in frequency and severity.
Last night, Will started presenting some of the same symptoms, including pale coloring, periodic drops in heart rate, and episodes of apnea. They started treating him as well, and gave him blood and started the basic antibiotic. The apnea got worse as time went on, and he was put back on a ventilator to help him breathe more regularly. As of right now, we don't know whether he has VRE as well, but we should know tomorrow. Either way, they added him to the isolated area of the NICU. The good news here is that the babies are together again, and his blood gas counts are improving and they are slowly weaning him off the vent.
We are still praying that the infections don't spread to other areas of their little bodies. We are also giving thanks that this is something treatable! Thanks to all of you for your care, concern, and prayers. More soon...
Yesterday, we learned that Susannah is growing a second type of bacteria in her urinary tract. The bad news is that this bacteria is resistant to the antibiotic normally used to treat the babies (VRE, for the medical professionals out there). The good news is that there is another antibiotic reserved for treating it, and that's what she's getting. However, since it is a resistant bug, she was placed in contact isolation. This means that the curtains around her are pulled most of the way at all times, and a plastic gown and gloves must be worn when you are in the area. That said, she does seem to be responding to the new meds, and the incidences of apnea are decreasing in frequency and severity.
Last night, Will started presenting some of the same symptoms, including pale coloring, periodic drops in heart rate, and episodes of apnea. They started treating him as well, and gave him blood and started the basic antibiotic. The apnea got worse as time went on, and he was put back on a ventilator to help him breathe more regularly. As of right now, we don't know whether he has VRE as well, but we should know tomorrow. Either way, they added him to the isolated area of the NICU. The good news here is that the babies are together again, and his blood gas counts are improving and they are slowly weaning him off the vent.
We are still praying that the infections don't spread to other areas of their little bodies. We are also giving thanks that this is something treatable! Thanks to all of you for your care, concern, and prayers. More soon...
Sunday, August 7, 2011
Pink
As I mentioned earlier, Susannah is borderline anemic. This can happen between three and four weeks of age as the fetal blood works out of the system and their little bodies are getting started on making new "regular" blood. If you're slow to start making your own blood, it can cause issues with breathing and heart rate. However, a simple transfusion can help give the head start you might need.
This morning, after another incidence of apnea, the doctor ordered blood for Susannah. She got that just as I arrived at the hospital this morning, and it took about three hours to give it to her. Already, her color has changed back to pink instead of the dull gray-ish color she had become. Her alarms were much quieter while I was there as well - lots less beeping and chiming going on. Things should stay this way, and hopefully she'll be off the IV in the next day or so and back in the bed next to her brother soon. She is still being treated for the UTI, but they are watching this closely and I know she is getting wonderful care.
Will is taking more and more milk from a bottle. He took 44 cc's for Dad last night, and 40 for me today. He's making lots of progress on learning how to suck/swallow/breathe. We are so proud!
Thank you for all the thoughts and prayers...
This morning, after another incidence of apnea, the doctor ordered blood for Susannah. She got that just as I arrived at the hospital this morning, and it took about three hours to give it to her. Already, her color has changed back to pink instead of the dull gray-ish color she had become. Her alarms were much quieter while I was there as well - lots less beeping and chiming going on. Things should stay this way, and hopefully she'll be off the IV in the next day or so and back in the bed next to her brother soon. She is still being treated for the UTI, but they are watching this closely and I know she is getting wonderful care.
Will is taking more and more milk from a bottle. He took 44 cc's for Dad last night, and 40 for me today. He's making lots of progress on learning how to suck/swallow/breathe. We are so proud!
Thank you for all the thoughts and prayers...
Saturday, August 6, 2011
Little Hurdles
It has been a busy few days! Kevin has been out of town for work, but is back home safely until Monday. I'm holding down the fort with his Mom's help (thank you, Kathy!!!).
The babies turned three weeks old this past Thursday. That morning, Susannah developed a case of intermittent apnea and drop in heart rate. Originally, the staff thought it was because she had been taken off her dose of caffeine, so they put her back on hoping that would resolve the problem. However, this is also a symptom of infection. They took blood (all counts normal) and started treating her for an infection as a precaution. As it turns out, she has a urinary tract infection, so it is a good thing they went ahead and started her on antibiotics early. She rests fairly comfortably, but they have restarted an IV, which means she has more tape on her arm, and restarted her on a cannula to help her breathe without wearing her out. As of this afternoon, she hadn't had any episodes of the apnea since the morning, so keep praying that it stays that way. She has also had to move out of her "condo" next to her brother and into a bed where they can keep a closer eye on her. Another possible cause of the dropped rates is anemia. Right now, her blood count is borderline, but a transfusion could be necessary if it doesn't improve.
Will is doing a better job taking his bottles. Dad fed him last night and he took 35 cc's! Here's evidence:
He's just trucking along, with his weight now up to 5 lbs, 6 oz! Susannah is still gaining as well, up to a hearty 3 lbs, 13 oz.
Another bit of info we got this week: All babies born before 32 weeks gestation have to have a particular eye exam before they are four weeks old or discharged, whichever comes first. Our munchkins fall into this category, and are four weeks old on Thursday. The problem is that Memorial doesn't have and can't seem to get a pediatric ophthalmologist to come over and do the exam. This means that the babies will need to be transferred to Baptist South in order to get their exams. The bad news is that once they leave Memorial, they won't come back. The good news is that we are familiar with Baptist South from our days there with Charlie, and it is a little closer to the house. They will be transported via ambulance with a very specialized transport team, and I plan to follow close behind.
Charlie is quickly approaching his second birthday, and some cousins and aunts and an uncle are coming to help celebrate. It should be an exciting week!
More soon...
The babies turned three weeks old this past Thursday. That morning, Susannah developed a case of intermittent apnea and drop in heart rate. Originally, the staff thought it was because she had been taken off her dose of caffeine, so they put her back on hoping that would resolve the problem. However, this is also a symptom of infection. They took blood (all counts normal) and started treating her for an infection as a precaution. As it turns out, she has a urinary tract infection, so it is a good thing they went ahead and started her on antibiotics early. She rests fairly comfortably, but they have restarted an IV, which means she has more tape on her arm, and restarted her on a cannula to help her breathe without wearing her out. As of this afternoon, she hadn't had any episodes of the apnea since the morning, so keep praying that it stays that way. She has also had to move out of her "condo" next to her brother and into a bed where they can keep a closer eye on her. Another possible cause of the dropped rates is anemia. Right now, her blood count is borderline, but a transfusion could be necessary if it doesn't improve.
Will is doing a better job taking his bottles. Dad fed him last night and he took 35 cc's! Here's evidence:
He's just trucking along, with his weight now up to 5 lbs, 6 oz! Susannah is still gaining as well, up to a hearty 3 lbs, 13 oz.
Another bit of info we got this week: All babies born before 32 weeks gestation have to have a particular eye exam before they are four weeks old or discharged, whichever comes first. Our munchkins fall into this category, and are four weeks old on Thursday. The problem is that Memorial doesn't have and can't seem to get a pediatric ophthalmologist to come over and do the exam. This means that the babies will need to be transferred to Baptist South in order to get their exams. The bad news is that once they leave Memorial, they won't come back. The good news is that we are familiar with Baptist South from our days there with Charlie, and it is a little closer to the house. They will be transported via ambulance with a very specialized transport team, and I plan to follow close behind.
Charlie is quickly approaching his second birthday, and some cousins and aunts and an uncle are coming to help celebrate. It should be an exciting week!
More soon...
Wednesday, August 3, 2011
Quiet
The babies are still growing...Susannah is still at 3 lbs, 12 oz, but Will has now topped 5 lbs! Both are putting on weight at a good pace.
Susannah is getting one bottle a day, and so far she's doing well. She's pretty little, so we have to be careful that we don't gag her in the process of trying to get her to eat - that's pretty counter productive! She's been taking between 10-15 cc's each day out of her bottle. Spit happens, but not enough to be concerning.
Will is still getting his two bottles daily. He takes at least 20 cc's out of each of them, and sometimes he's awake enough to finish.
At this point, we are waiting on them to get bigger so they can regulate their own body temps and learn how to eat on their own. I'll keep updating on their progress!
Thanks again to everyone for all the help, love, and support!
Susannah is getting one bottle a day, and so far she's doing well. She's pretty little, so we have to be careful that we don't gag her in the process of trying to get her to eat - that's pretty counter productive! She's been taking between 10-15 cc's each day out of her bottle. Spit happens, but not enough to be concerning.
Will is still getting his two bottles daily. He takes at least 20 cc's out of each of them, and sometimes he's awake enough to finish.
At this point, we are waiting on them to get bigger so they can regulate their own body temps and learn how to eat on their own. I'll keep updating on their progress!
Thanks again to everyone for all the help, love, and support!
Monday, August 1, 2011
Counting...
Day 18 and counting... Specifically, we're counting:
1. Weights of 4 lbs, 12 oz and 3 lbs, 12 oz! Lots of good gaining last night.
2. Two bottles a day for William. He is a bit inconsistent; sometimes he'll take the whole 43 cc's, other times a little less. But we're getting there, and it is still early!
3. One bottle a day for Susannah! Yesterday, she took 13 cc's out of her 33 cc feeding. A great first try!
4. One ugly sinus infection for Mom, so I'm heartbroken that I can't go to the hospital today. However, got a nice antibiotic injection yesterday evening, so I should be good to go by tomorrow. You can bet I'll be calling in to get full reports and make sure my children are being sweet to all the nurses.
5. One silly big brother, who has a fascination with hats as well as Elmo:
6. Two babies in the arms of one daddy:
More soon!
1. Weights of 4 lbs, 12 oz and 3 lbs, 12 oz! Lots of good gaining last night.
2. Two bottles a day for William. He is a bit inconsistent; sometimes he'll take the whole 43 cc's, other times a little less. But we're getting there, and it is still early!
3. One bottle a day for Susannah! Yesterday, she took 13 cc's out of her 33 cc feeding. A great first try!
4. One ugly sinus infection for Mom, so I'm heartbroken that I can't go to the hospital today. However, got a nice antibiotic injection yesterday evening, so I should be good to go by tomorrow. You can bet I'll be calling in to get full reports and make sure my children are being sweet to all the nurses.
5. One silly big brother, who has a fascination with hats as well as Elmo:
6. Two babies in the arms of one daddy:
More soon!
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