Recent posts have detailed the couple of respiratory illnesses that Verity had in March and April, so now it's time for a general update on the slew of other appointments we've had over the past few months! October was our busy month in the fall as the referrals finally went through and we started seeing her specialty providers, and April of course was the 6-month mark for follow-up. So here is the list of what all we've been up to!
March 22: Pulmonology
The pulmonology follow-up was scheduled even before Verity's first illness struck, but it was timed well as she had been out of the hospital about 10 days or so. At that time her lungs sounded amazingly good, and since we had never had any lung issues before, the doctor said she would leave it up to the Sleep Clinic doctor as to whether or not she would continue to follow Verity. Of course, little did we know that Verity would have pneumonia about a month later! Sleep clinic is scheduled for May 25...
April 2: Ophthalmology
We drove 45 minutes to get to Ft. Carson to spend a whopping 5 minutes with Dr. B, who assured us Verity's eyes are looking great and he doesn't need to dilate them again until our fall appointment. Okie dokie then.
April 17: Orthopedics
At this follow-up appointment we got another hip X-ray, which indicated her left hip is still stiff but not any worse than in the fall. Her feet are looking good and we are to continue using the bar (supposedly naps and nighttime but in reality more like 2-3 hour chunks a couple of times a day).
April 19: Pediatric Visit
We needed a doctor to look at Verity's umbilical hernia, which was repaired with her G-tube surgery May 2017 but has been flaring up again recently. She ordered an abdominal ultrasound. (This is the day we realized Verity was getting sick, and at 3am the next morning we took her to the hospital, where she was diagnosed with aspiration pneumonia.)
April 24: Renal ultrasound and barium enema
The ultrasound looked normal (per the follow-up the next day), and the barium enema did not reveal any particular reason for Verity's difficulty pooping, although it did show a "tortuous" pathway. (Once she gets started going she does pretty well, but we frequently have to give her a liquid suppository to start the process.)
April 25: BAHA fitting
Verity got her Bone-Assisted Hearing Aid, which fits on a headband! We learned lots of details about how to use this device and have a whole bag of STUFF to go along with it. She wears it in stints, as it is very overwhelming for her to have it on all the time at this point. Slowly we are working up to it! She isn't terribly responsive, although we know for sure when she is DONE!
April 30: Adaptive Stroller Shopping
We went to an equipment provider that we know of through The Resource Exchange (our home therapy program) to look at and take measurements for an adaptive stroller for Verity.
May 3: Echocardiogram
Our cardiologist is very optimistic about the way Verity's heart looks right now. Her large VSD has completely patched up! She still has a teeny tiny one that causes her heart murmur, but everything is balanced, and he does not think PH will be a problem. Whew! He feels comfortable waiting another year before we do another echo.
May 4: Post-hospital follow-up with PCM
Verity had been off oxygen for some time before we had this appointment, and she looked quite well. Her PCM was pleased.
May 7: Abdominal ultrasound
This was a pretty quick appointment, but we didn't hear anything about the results until I asked a week later. We have a referral to see a pediatric surgeon since clearly the hernia is there.
May 15: Dietitian assessment
Our Verity weighed in at 14 pounds, 14 ounces!! And she is 26 inches long now!! In less than 2 weeks, she will be 15 months old...15 pounds by 15 months!!! Clearly she is growing and thriving on the Nourish formula. Now that she is 100% on this whole-foods mixture (plus plenty of water), our next step is to meet with the GI doc and formulate a plan for compressing her feeds so that she can get on more of a bolus feeding schedule. Her vomiting can still be a problem, particularly when she is bearing down to poo or pass gas, but it is much less frequently to be sure. I'm not going to lie...I would LOVE for her to not be hooked to the feeding pump 24/7. But...counting my blessings. Our baby is growing and thriving and becoming SO much stronger and sturdier!
In between all the above listed appointments were nearly weekly visits to the chiropractor as well as nearly weekly occupational and physical therapy sessions in our home.
COMING UP:
May 25: GI follow-up and Sleep Clinic
May 31: Surgery consult
June 6: Speech evaluation
June 7: BAHA check
Whew. That's all for now, folks!!!
Showing posts with label Therapy. Show all posts
Showing posts with label Therapy. Show all posts
Wednesday, May 16, 2018
Sunday, April 8, 2018
Go, Baby, Go!
Verity and about a dozen other kids in our area got to participate in a neat program for special needs kids who particularly need help with mobility. The Resource Exchange (the program through which we get our weekly at-home therapy sessions) partnered with area sponsors and volunteers to provide little cars for the kids. (Almost 16-year-old Tobin lamented that Verity got a car before him, lol.)
Our family arrived at the event center at a local mall to get Verity fitted for her car. She was by far the smallest participant, so she needed a lot more modifications, which unfortunately meant that she wasn't able to participate in the grand parade at the end of the morning's efforts. But, we have a car! And while it may need a few tweaks, overall it seems to work for her, and we look forward to taking her out in it when the weather is nice and we have enough people available to make sure it's safe!
To see a video of Verity "driving" her car (she pushed the button to make it start!), you can go here!
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| Look! It's Trisomy 18 BLUE! Perfect, since March was Trisomy Awareness Month! |
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| The initial assessment: how can we keep her seated safely? |
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| See the big red button?! That's what she pushes to make it go! |
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| Lots of people brainstorming ideas for the best way to make this work for Verity |
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| Taking a break to be silly with Daddy |
Wednesday, September 27, 2017
Current Events with Verity!
In a recent update, I mentioned that we may have found some solutions for Verity's reflux. I had to leave it hanging, hoping to be able to detail our new feeding routine sooner rather than later. Facebook is faster than blogging, so I posted a video a few days ago about the open syringe gravity feeds we have been doing for Verity. I'm hoping that even if you aren't on Facebook, perhaps you can view the video? If not...just know that it has made a huge difference overall--no vomiting at all!--and while we aren't totally rid of the tummy issues, the lack of spewing out of her mouth and nose has made her AND us much happier. Our T18 babies unfortunately just have lots of digestive issues due to their smaller physiques or other anatomical issues. (She is fussing and grunting in the background even as I type...her daddy is with her, though, so I'm sneaking some time here.)
I've been on overload the past couple of weeks. Now that Verity is in The System and referrals are coming through, I have spent an extraordinary amount of time on the phone and/or dealing with paperwork. The good news is that my calendar is filling up with appointments. The bad news...is that my calendar is filling up with appointments. :-/ Here's a rundown of what we've been doing the last couple of weeks JUST related to Verity's specialty care:
18 Sept - Chiropractor appt
19 Sept - Physical Therapy (at our house)
20 Sept - Occupational Therapy (at our house)
21 Sept - 40-minute phone consultation with dietitian
21 Sept - Physical Therapist & Vision Specialist visited/assessed Verity
26 Sept - Physical Therapy (at our house)
28 Sept - morning - Meeting with Dietitian (at our house)
28 Sept - afternoon - Occupational Therapy (at our house)
29 Sept - morning - GI appt
29 Sept - afternoon - Chiro appt
Note this does NOT include all the time on email and the phone setting up future appointments, dealing with getting new medical equipment from a local medical supply company (feeding pump & supplies, suction machine...), fending off calls from bill collection agencies, contacting TriCare, contacting TriCare again, finally getting TriCare to pay for all the stuff they said they'd pay for...
The Resource Exchange (TRE), which is (I believe) the equivalent of Iowa's Early Access services that we were getting before moving, has been fabulous in working with us regarding our immediate goals of helping Verity with her feeding and sleeping issues. I am very fond of the ladies we see on a weekly basis at this point, and I am immensely grateful that they come to our house instead of me having to pack up and go somewhere. They are very flexible, also, and when it works out, Christine (PT) and Susan (OT) try to come at the same time...it just hasn't always worked out.
Upcoming appointments, aside from TRE meetings:
3 Oct - Ophthalmology
16 Oct - ENT (for requesting a sleep study)
17 Oct - Orthopedics
26 Oct - Cardiology
And don't even get me started on all the different dates I will be dragging children to our new dentist's office for overdue cleanings. Sigh. I hate moving.
But...finally we are moving forward with our continued commitment to providing Verity with the best care we possibly can.
I've been on overload the past couple of weeks. Now that Verity is in The System and referrals are coming through, I have spent an extraordinary amount of time on the phone and/or dealing with paperwork. The good news is that my calendar is filling up with appointments. The bad news...is that my calendar is filling up with appointments. :-/ Here's a rundown of what we've been doing the last couple of weeks JUST related to Verity's specialty care:
18 Sept - Chiropractor appt
19 Sept - Physical Therapy (at our house)
20 Sept - Occupational Therapy (at our house)
21 Sept - 40-minute phone consultation with dietitian
21 Sept - Physical Therapist & Vision Specialist visited/assessed Verity
26 Sept - Physical Therapy (at our house)
28 Sept - morning - Meeting with Dietitian (at our house)
28 Sept - afternoon - Occupational Therapy (at our house)
29 Sept - morning - GI appt
29 Sept - afternoon - Chiro appt
Note this does NOT include all the time on email and the phone setting up future appointments, dealing with getting new medical equipment from a local medical supply company (feeding pump & supplies, suction machine...), fending off calls from bill collection agencies, contacting TriCare, contacting TriCare again, finally getting TriCare to pay for all the stuff they said they'd pay for...
The Resource Exchange (TRE), which is (I believe) the equivalent of Iowa's Early Access services that we were getting before moving, has been fabulous in working with us regarding our immediate goals of helping Verity with her feeding and sleeping issues. I am very fond of the ladies we see on a weekly basis at this point, and I am immensely grateful that they come to our house instead of me having to pack up and go somewhere. They are very flexible, also, and when it works out, Christine (PT) and Susan (OT) try to come at the same time...it just hasn't always worked out.
Upcoming appointments, aside from TRE meetings:
3 Oct - Ophthalmology
16 Oct - ENT (for requesting a sleep study)
17 Oct - Orthopedics
26 Oct - Cardiology
And don't even get me started on all the different dates I will be dragging children to our new dentist's office for overdue cleanings. Sigh. I hate moving.
But...finally we are moving forward with our continued commitment to providing Verity with the best care we possibly can.
Tuesday, June 13, 2017
Children's Developmental Clinic
At the end of May we had the opportunity to spend the morning in the Children's Developmental Clinic, an all-in-one-day approach where various doctors came to our exam room instead of us going all over the place to visit with specialists. We had been referred to this specialty clinic back during our NICU stay, when we met with the geneticist who works with this team. Anyway...initially our appointment had been set for July, AFTER our moving date! Thankfully we caught the mistake (our own paperwork listed June as the appointment date), and they were able to work us in May 31.
Verity and I were up early to prepare for our big day. (Ted and 4 of our kids were in Colorado for a family visit and house hunting trip. We have a rental--hooray! Looking forward to being settled in our new home with mountain views! But I digress...)
As you can see, Verity was exhausted from getting up early, ha! Actually, if I recall correctly, due to a concentrated prayer effort (I believe!), Verity actually let me get a decent night of sleep the night before this long day...a much-appreciated gesture, to be sure, after a number of horrific nights while single parenting.
We first met with a pediatrician for an overview. He showed me Verity's growth chart--at 8 pounds, 11 ounces, she's still a little peanut for a 3-month-old, but he was pleased with her growth curve, as it is proportional and definitely trending upward. I spoke with him about her seemingly unending fussiness, and he said that if it doesn't improve after some more time, he would look into possibly trying reflux medicine, but he wasn't sure that was the best first option. Overall, he was pleased with her progress and her appearance, which of course was incredibly encouraging to this mama!
Next we saw an orthopedic representative. Our doctor who did Verity's castings and tenotomy wasn't available, having had her own baby a couple of weeks prior. The lady who came in admitted that the boots and bar wasn't her specialty; when I asked her about how to better help Verity's feet stay IN the boots and avoid pressure sores, she called in a man from orthotics who ended up being my favorite person of the day: he took one look at Verity's bar and pronounced it TOO LONG! He took it to his shop, shortened it maybe 2 inches or so, and voila! Soooo much better! In fact, Verity spent most of the rest of the day sleeping, lol. Clearly it wasn't the cure-all, as she is still a terrible sleeper at night, but it has helped tremendously with her overall well-being. And Jim also gave me lots of great little tips for getting the boots and bar back on without so much of the trauma-and-tears routine. I am so very grateful. Below you can see a side-by-side comparison of the before and after bar.
Next up, a physical therapist. Her recommendations for Verity included ways to help her do a "push-up" kind of motion to develop those muscles. After 30 years in this profession, she clearly knows a lot and has a lot of practical wisdom, such as trusting our own parental instincts and asking therapists about research to back up their suggestions (or preferences). Best quote: "She is so precious! Your main job is to love her." Aaaaaahhh. More wisdom included to keep on keeping on--keep doing what we're doing; let Verity lead but also let her go at her own pace. Wonderful advice.
The occupational therapist also gave some great practical tips. Since tummy time is not a favorite for Verity, she recommended doing it at each diaper change, just a quick, short burst that would make it part of our routine. For Verity's clenched hands, she suggested a small bit of cut up cloth to roll up and put inside her hands to help with the sweat and skin breakdown as well as give gentle stretching for her fingers. Also recommended: lotion massages, starting at the shoulder and working down to the hands to help relax them and allow us to open up her hands a little more easily. [As a side note...it has now been almost 2 weeks since we were at the CDC, and I confess I have NOT yet done the cloth-inside-the-palms thing, although I did locate and wash the washcloth I intend to cut up for this task!! But, on the plus side, her hands have been so much more relaxed recently, allowing us to work our thumbs and sometimes plastic toy rings inside for her to "grip" and do a bit of "tug-of-war." So...we are making progress anyway!]
The genetics team visit was a very short one; I hardly have any notes. I did learn (upon questioning) that they aren't really interested in pushing for more testing to see if Verity truly is a full trisomy 18 or if she might be mosaic. (Some have questioned, because she is clearly doing much better than many FT18 babies...or at least better than a FT18 prognosis.) Otherwise, the only things I wrote on my note sheet were to "keep doing what we're doing" and "keep the bar of expectations high."
Finally we saw a social worker. Since some folks had recommended looking into respite care, I did ask what she knew about that, whether military coverage allows for anything like that or not, since we heard at one point that Tricare doesn't pay for home visits from nurses (back when we were trying to figure out if we could learn to place the NG tubes ourselves). She said the EFMP folks (Exceptional Family Member Program) would be the place to start asking and that with programs like the ones that pay for respite care, generally the funding is available but it's usually up to the parents to actually find the caregivers themselves. The Colorado Early Intervention people could probably give us referrals. Obviously this isn't something we have time to investigate before our move (which is happening in just about a month, eeeek!). Thankfully, though, we have been blessed with an amazing church family, and Verity has had several overnights with loving ladies who have offered to give us the gift of sleep!
So! That's the story of our visit. We were there a total of 4 hours, and it was all positive and encouraging feedback.
Verity and I were up early to prepare for our big day. (Ted and 4 of our kids were in Colorado for a family visit and house hunting trip. We have a rental--hooray! Looking forward to being settled in our new home with mountain views! But I digress...)
As you can see, Verity was exhausted from getting up early, ha! Actually, if I recall correctly, due to a concentrated prayer effort (I believe!), Verity actually let me get a decent night of sleep the night before this long day...a much-appreciated gesture, to be sure, after a number of horrific nights while single parenting.
We first met with a pediatrician for an overview. He showed me Verity's growth chart--at 8 pounds, 11 ounces, she's still a little peanut for a 3-month-old, but he was pleased with her growth curve, as it is proportional and definitely trending upward. I spoke with him about her seemingly unending fussiness, and he said that if it doesn't improve after some more time, he would look into possibly trying reflux medicine, but he wasn't sure that was the best first option. Overall, he was pleased with her progress and her appearance, which of course was incredibly encouraging to this mama!
Next we saw an orthopedic representative. Our doctor who did Verity's castings and tenotomy wasn't available, having had her own baby a couple of weeks prior. The lady who came in admitted that the boots and bar wasn't her specialty; when I asked her about how to better help Verity's feet stay IN the boots and avoid pressure sores, she called in a man from orthotics who ended up being my favorite person of the day: he took one look at Verity's bar and pronounced it TOO LONG! He took it to his shop, shortened it maybe 2 inches or so, and voila! Soooo much better! In fact, Verity spent most of the rest of the day sleeping, lol. Clearly it wasn't the cure-all, as she is still a terrible sleeper at night, but it has helped tremendously with her overall well-being. And Jim also gave me lots of great little tips for getting the boots and bar back on without so much of the trauma-and-tears routine. I am so very grateful. Below you can see a side-by-side comparison of the before and after bar.
Next up, a physical therapist. Her recommendations for Verity included ways to help her do a "push-up" kind of motion to develop those muscles. After 30 years in this profession, she clearly knows a lot and has a lot of practical wisdom, such as trusting our own parental instincts and asking therapists about research to back up their suggestions (or preferences). Best quote: "She is so precious! Your main job is to love her." Aaaaaahhh. More wisdom included to keep on keeping on--keep doing what we're doing; let Verity lead but also let her go at her own pace. Wonderful advice.
The occupational therapist also gave some great practical tips. Since tummy time is not a favorite for Verity, she recommended doing it at each diaper change, just a quick, short burst that would make it part of our routine. For Verity's clenched hands, she suggested a small bit of cut up cloth to roll up and put inside her hands to help with the sweat and skin breakdown as well as give gentle stretching for her fingers. Also recommended: lotion massages, starting at the shoulder and working down to the hands to help relax them and allow us to open up her hands a little more easily. [As a side note...it has now been almost 2 weeks since we were at the CDC, and I confess I have NOT yet done the cloth-inside-the-palms thing, although I did locate and wash the washcloth I intend to cut up for this task!! But, on the plus side, her hands have been so much more relaxed recently, allowing us to work our thumbs and sometimes plastic toy rings inside for her to "grip" and do a bit of "tug-of-war." So...we are making progress anyway!]
The genetics team visit was a very short one; I hardly have any notes. I did learn (upon questioning) that they aren't really interested in pushing for more testing to see if Verity truly is a full trisomy 18 or if she might be mosaic. (Some have questioned, because she is clearly doing much better than many FT18 babies...or at least better than a FT18 prognosis.) Otherwise, the only things I wrote on my note sheet were to "keep doing what we're doing" and "keep the bar of expectations high."
Finally we saw a social worker. Since some folks had recommended looking into respite care, I did ask what she knew about that, whether military coverage allows for anything like that or not, since we heard at one point that Tricare doesn't pay for home visits from nurses (back when we were trying to figure out if we could learn to place the NG tubes ourselves). She said the EFMP folks (Exceptional Family Member Program) would be the place to start asking and that with programs like the ones that pay for respite care, generally the funding is available but it's usually up to the parents to actually find the caregivers themselves. The Colorado Early Intervention people could probably give us referrals. Obviously this isn't something we have time to investigate before our move (which is happening in just about a month, eeeek!). Thankfully, though, we have been blessed with an amazing church family, and Verity has had several overnights with loving ladies who have offered to give us the gift of sleep!
So! That's the story of our visit. We were there a total of 4 hours, and it was all positive and encouraging feedback.
Friday, March 10, 2017
The "H" Word
Days 10 and 11
Aside from meeting with the cardiologists yesterday morning, the big news was that we heard the "H" word--HOME. Dr. A had a plan for getting us HOME early next week! I am combining these two days' updates because much of today's activity came out of discussions we had yesterday.
So, the doctor's goals and ours are the same: to get us home soon, but more importantly, to get us home safely. I so appreciate how clearly everyone is rooting for Verity to thrive and are working with her best interests in mind. This is all too often NOT the case for Trisomy families, and sadly many of them don't know differently and follow recommendations based on inaccurate information. Dr. A's two biggest things were making sure Verity could breathe well on her own (check!) plus making sure we had a plan of action for keeping her fed and growing.
As for that first item, we have been thrilled overall with Verity's numbers. While there have been alarms ringing with elevated heart rate and lower oxygen sats from time to time, they are not concerning and easily explained: she's mad, she's having a small bit of reflux, the monitors got kicked off, etc. The cardiologists as well as the NICU doctor cannot detect any heart murmur, and what we've seen over the past week and a half or so is a good indication of Verity's "normal," and nothing about it is concerning. There are no signs of apnea, for example, a very common Trisomy 18 problem. So while I have tended to worry over any change in status quo, talking with various doctors over the last couple of days has given me a lot more freedom to just RELAX. Verity is doing great!
As for the second going-home-milestone, we were optimistic in thinking that a 30-day feeding tube placement would get us home early next week, probably Tuesday, and we'd be able to work on nursing at our leisure while making sure Verity gets the nutrition she needs to grow. So, today revolved around feeding tube efforts. The nurses placed it early this morning; an X-ray was taken close to lunch time to make sure the end of it was in the appropriate place (it wasn't and needed to be drawn back 2cm); and a doctor arrived close to dinner time to put the bridle on. The bridle would have essentially tied it off underneath her nose, securing it so that it wouldn't be able to be yanked out. Unfortunately, though they were using the smallest/thinnest option available, Verity's nose is still too small for this to work for us.
This is a disappointing setback to be sure. However, in the scheme of things, it is a setback that we can deal with, even if we don't like our alternatives. A G-button is not really a good option at this point; it must be inserted via surgery, and they prefer not to do surgery on one as small as Verity. It may very well be ideal in the future, but now is not the right time. The only other alternative seems to be that Ted and I will have to learn how to place the tubes that she has been using here in the NICU. While I'm less than thrilled about this (I nearly passed out watching the nurse insert it last week and left to go shower when they were putting in the larger one today), I know that we will do what needs to be done, and after awhile it won't seem like a big deal. But the hassle, not to mention the risk of it being pulled out (by Verity or a curious sibling), just makes me heave a sigh...these are the things no one signs up for...you just do what you have to do. Anyway...all of this could mean that we don't actually get to go home on Tuesday; we just kind of have to wait and see.
In happier news, and going along with the feeding report, a speech therapist came in this morning and sat with me during a nursing attempt. Thankfully it was a fairly good attempt! Verity latched and sucked and swallowed multiple times. This all takes a lot of effort for her still, and we are nowhere close to being able to count on nursing as a major means of acquiring calories, but the structure of her mouth plus all the cues she is giving us indicate that she is fully capable of nursing someday, and so this is what we plan to work toward.
And along those lines, I've learned so much from the lactation consultants here! Once again, I'm amazed at how much of a continual learning process this is...my nursing resume continues to grow, lol. We decided today that my supply, while adequate for Verity's needs right now, really isn't where I'd like it to be, and so I have some new tips and tricks to try for gradually increasing it.
We've increased Verity's feeds to 50ml (given over 30 minutes) every 3 hours. They continue to fortify with extra calories, but she's getting breastmilk every time instead of a mix of my milk plus formula. So hooray for that! Though her weight last night had dipped JUST a bit, tonight she was up to 5 pounds, 5.3 ounces, her heaviest weight yet.
We also had a visit from a physical therapist today to initiate conversations about various therapies that will help Verity; we should receive a visit from an occupational therapist soon, but I don't know if it will be tomorrow or after the weekend. Our state of residence has a program called Early Intervention that will allow us to receive home visits from therapists in the area, and once we are in that system, they can hand us off to our next location so we can continue with forward progress. (No word yet on whether I'll be provided with a personal massage therapist, which I desperately need after sleeping under stress on a hospital bed for 11 nights...! Bummer that I had to cancel a scheduled massage appointment because Verity arrived the day before, lol.)
In other NICU news, our doctor received an award from the university (well-deserved, I'm sure! I love her!), and a film crew was here today to follow her around and work on a video. Dr. A asked me if I would be willing for Verity to be one of the patients she would see while on camera, and I told her we would be honored! I got a little emotional when she asked (hormones!) and told her that we had prayed that God would put together just the right team to care for Verity after she arrived, and we were so thankful that God had allowed Dr. A to have her two weeks of rounds at the same time we arrived in the NICU. So, Verity and I had cameo roles in this video! I had to sign a release form and everything, lol. The film crew had no idea about Verity's diagnosis, so I had the opportunity to share a little bit with them and give each of them a Verity card to keep.
Aside from meeting with the cardiologists yesterday morning, the big news was that we heard the "H" word--HOME. Dr. A had a plan for getting us HOME early next week! I am combining these two days' updates because much of today's activity came out of discussions we had yesterday.
So, the doctor's goals and ours are the same: to get us home soon, but more importantly, to get us home safely. I so appreciate how clearly everyone is rooting for Verity to thrive and are working with her best interests in mind. This is all too often NOT the case for Trisomy families, and sadly many of them don't know differently and follow recommendations based on inaccurate information. Dr. A's two biggest things were making sure Verity could breathe well on her own (check!) plus making sure we had a plan of action for keeping her fed and growing.
As for that first item, we have been thrilled overall with Verity's numbers. While there have been alarms ringing with elevated heart rate and lower oxygen sats from time to time, they are not concerning and easily explained: she's mad, she's having a small bit of reflux, the monitors got kicked off, etc. The cardiologists as well as the NICU doctor cannot detect any heart murmur, and what we've seen over the past week and a half or so is a good indication of Verity's "normal," and nothing about it is concerning. There are no signs of apnea, for example, a very common Trisomy 18 problem. So while I have tended to worry over any change in status quo, talking with various doctors over the last couple of days has given me a lot more freedom to just RELAX. Verity is doing great!
As for the second going-home-milestone, we were optimistic in thinking that a 30-day feeding tube placement would get us home early next week, probably Tuesday, and we'd be able to work on nursing at our leisure while making sure Verity gets the nutrition she needs to grow. So, today revolved around feeding tube efforts. The nurses placed it early this morning; an X-ray was taken close to lunch time to make sure the end of it was in the appropriate place (it wasn't and needed to be drawn back 2cm); and a doctor arrived close to dinner time to put the bridle on. The bridle would have essentially tied it off underneath her nose, securing it so that it wouldn't be able to be yanked out. Unfortunately, though they were using the smallest/thinnest option available, Verity's nose is still too small for this to work for us.
This is a disappointing setback to be sure. However, in the scheme of things, it is a setback that we can deal with, even if we don't like our alternatives. A G-button is not really a good option at this point; it must be inserted via surgery, and they prefer not to do surgery on one as small as Verity. It may very well be ideal in the future, but now is not the right time. The only other alternative seems to be that Ted and I will have to learn how to place the tubes that she has been using here in the NICU. While I'm less than thrilled about this (I nearly passed out watching the nurse insert it last week and left to go shower when they were putting in the larger one today), I know that we will do what needs to be done, and after awhile it won't seem like a big deal. But the hassle, not to mention the risk of it being pulled out (by Verity or a curious sibling), just makes me heave a sigh...these are the things no one signs up for...you just do what you have to do. Anyway...all of this could mean that we don't actually get to go home on Tuesday; we just kind of have to wait and see.
In happier news, and going along with the feeding report, a speech therapist came in this morning and sat with me during a nursing attempt. Thankfully it was a fairly good attempt! Verity latched and sucked and swallowed multiple times. This all takes a lot of effort for her still, and we are nowhere close to being able to count on nursing as a major means of acquiring calories, but the structure of her mouth plus all the cues she is giving us indicate that she is fully capable of nursing someday, and so this is what we plan to work toward.
And along those lines, I've learned so much from the lactation consultants here! Once again, I'm amazed at how much of a continual learning process this is...my nursing resume continues to grow, lol. We decided today that my supply, while adequate for Verity's needs right now, really isn't where I'd like it to be, and so I have some new tips and tricks to try for gradually increasing it.
We've increased Verity's feeds to 50ml (given over 30 minutes) every 3 hours. They continue to fortify with extra calories, but she's getting breastmilk every time instead of a mix of my milk plus formula. So hooray for that! Though her weight last night had dipped JUST a bit, tonight she was up to 5 pounds, 5.3 ounces, her heaviest weight yet.
We also had a visit from a physical therapist today to initiate conversations about various therapies that will help Verity; we should receive a visit from an occupational therapist soon, but I don't know if it will be tomorrow or after the weekend. Our state of residence has a program called Early Intervention that will allow us to receive home visits from therapists in the area, and once we are in that system, they can hand us off to our next location so we can continue with forward progress. (No word yet on whether I'll be provided with a personal massage therapist, which I desperately need after sleeping under stress on a hospital bed for 11 nights...! Bummer that I had to cancel a scheduled massage appointment because Verity arrived the day before, lol.)
In other NICU news, our doctor received an award from the university (well-deserved, I'm sure! I love her!), and a film crew was here today to follow her around and work on a video. Dr. A asked me if I would be willing for Verity to be one of the patients she would see while on camera, and I told her we would be honored! I got a little emotional when she asked (hormones!) and told her that we had prayed that God would put together just the right team to care for Verity after she arrived, and we were so thankful that God had allowed Dr. A to have her two weeks of rounds at the same time we arrived in the NICU. So, Verity and I had cameo roles in this video! I had to sign a release form and everything, lol. The film crew had no idea about Verity's diagnosis, so I had the opportunity to share a little bit with them and give each of them a Verity card to keep.
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