Verity's tenotomy surgery and ensuing cast (and cast removal) adventures seemed to dominate our November and December posts in her group. So not too many people know about our visits to her ENT and the sleep doctor in mid to late December, a long-awaited follow-up to the sleep study she had in September.
Immediately after her study was over--as in, that very same afternoon--we received a phone call from the nurses on duty who had read over the report by the respiratory therapist who observed Verity overnight. The study still indicated severe obstructive sleep apnea (OSA), and we were instructed to continue administering oxygen via nasal cannula at night or during naps as needed.
This was somewhat surprising news: Verity's sleep patterns seemed much improved, and she didn't exhibit any of the typical signs of OSA such as snoring. We had thought reflux was the culprit of the obstruction from months past, and with the start of the continuous feed and significant reduction of vomiting during January through the summer, we thought we were on the right track.
Interestingly, though, as we started monitoring Verity with the pulse oximeter and having oxygen at the ready, we noticed that she either had a number of nights in a row during which her saturations would be in the high 90s without oxygen, OR she would have noticeable snoring and need even more oxygen than originally recommended (only 1/32 - 1/16L). We resigned ourselves to having to wait for more information, since the "soonest" they could get us in to see her doctors was December, nearly 3 months after the sleep study! Meanwhile, we were grateful for a fairly consistent night nurse schedule as well as a friend who filled in (and still does fill in) to give Verity care and monitoring during the night. (As an aside, nowadays Verity does need oxygen almost all the time during her naps and at night. It can fluctuate between 1/32 - 1/8L, only needing more if she is fighting a respiratory illness, which, thankfully, has only happened a couple of times this season, and without a hospital stay! Verity does snore pretty substantially, fairly often, though positioning does affect this of course.)
So our first respiratory-related visit in December was with the ENT, who did a quick upper airway scope through her nose right there in the office, revealing nothing other than inflammation from reflux. (That answered my question of whether reflux was still an ongoing issue--clearly it is, even though we don't always see it coming OUT.) He did decide to put her on some nasal drops (Flonase) to help with some swelling to see if that would help (it hasn't noticeably). And then he said we would do a bronchoscopy (evaluation of the airway) to take a closer look at what is causing the obstruction.
A week later we saw the sleep clinic doctor, and she agreed with the ENT that a pulmonologist should be on board with the bronch, so together they have coordinated their schedules for the procedure, which will be while Verity is fully sedated. If the ENT sees something that can be corrected surgically (enlarged tonsils or adenoids, for example), he will do the surgery while Verity is already sedated. Meanwhile, the pulmonologist will check Verity's lungs, taking fluid samples for examination/culturing. (This is called a bronchial lavage, or lung washing. Sounds fun, eh?!)
The plan is to repeat a sleep study at least 6 weeks following the bronchoscopy to see if her OSA has improved. If it has not, then we will move toward fitting her for CPAP. Since Verity is still so tiny, the sleep doctor is reluctant to make that our first step...or rather, our next step, I guess, since we have been addressing this issue for over a year now.
These procedures and surgeries are pretty common in the Trisomy community, as our kiddos are smaller than usual but their tonsils and adenoids may continue to grow at a more "normal" rate. Still, it's always concerning when our little ones must undergo anesthesia--thankfully we have now noted CLEARLY in Verity's records that she is not to be given fentanyl!
Please pray with us for the February 5 procedure and recovery afterward. Thank you in advance!!
Showing posts with label Pulse Oximeter. Show all posts
Showing posts with label Pulse Oximeter. Show all posts
Sunday, January 20, 2019
Friday, May 11, 2018
Pneumonia and Recovery
About 6 weeks after Verity's overnight hospital stay in March, we were back again after monitoring her at home being unable to keep her sats up. I had taken a nap in the early evening, knowing it was going to be a rough night, and spent hours tweaking her o2 and watching the numbers fluctuate on the pulse oximeter. When her heart rate soared over 200 and wouldn't come down, I woke Ted and we packed up for the hospital.
Unlike the previous ER visit, this one involved lots of tests. We were admitted with the diagnosis of aspiration pneumonia. Since I had been awake all night, I drove home after Ted and Verity finished the admissions process, swapping out with him the following day (and bringing a diffuser plus essential oils, lol).
The scariest part of the whole thing was watching Verity's labored breathing. Her retractions were unlike anything I had ever seen. I was hoping to get her on CPAP or BiPAP, something that we felt would ease the difficulty she was having with her breathing, but they only do that in the PICU (at this particular hospital), and we were in the pediatric acute care unit. (Don't ask me why they can't bring it to those rooms!!) The doctors did listen to my concerns and said they were monitoring her to see if she needed to move to PICU. She never did. Amazingly the nights were not too terrible; it was the afternoons where she seemed to have the acute episodes.
This visit was three days and two nights, and once again we were discharged to come home on oxygen (1/16L prescribed, but we did have to adjust depending on her sats). Verity had an IV in the hospital, but we were given a prescription for "oral" (i.e. G-tube) antibiotics at home. Thankfully she did not have any adverse reactions to the medicine.
It has been about 3 weeks since our hospital visit, and we have had a number of appointments since then (many unrelated to her pneumonia). Overall she is doing quite well, although she has been noticeably sleepy (regrettably not always during the night--hence my writing this at 2:30am!). Every now and then we see a low grade fever, and she has had days where getting a smile out of her is nigh impossible. But for all the fussy periods, she does have her happy, playful times as well, and thankfully her vitals keep looking good. She came off oxygen maybe a week or so after we got home from the hospital. (These weeks have been a blur with all our appointments, which I will detail in a separate post.)
I am thankful Verity seems to be robust and healthy enough to bounce back so well from such a scary illness. But I confess that I will never be able to shake the sense of dread that looms over us whenever we are making a hurried trip to the hospital--we've seen too many babies fly to heaven to take for granted that we will always be able to bring her home.
Unlike the previous ER visit, this one involved lots of tests. We were admitted with the diagnosis of aspiration pneumonia. Since I had been awake all night, I drove home after Ted and Verity finished the admissions process, swapping out with him the following day (and bringing a diffuser plus essential oils, lol).
The scariest part of the whole thing was watching Verity's labored breathing. Her retractions were unlike anything I had ever seen. I was hoping to get her on CPAP or BiPAP, something that we felt would ease the difficulty she was having with her breathing, but they only do that in the PICU (at this particular hospital), and we were in the pediatric acute care unit. (Don't ask me why they can't bring it to those rooms!!) The doctors did listen to my concerns and said they were monitoring her to see if she needed to move to PICU. She never did. Amazingly the nights were not too terrible; it was the afternoons where she seemed to have the acute episodes.
This visit was three days and two nights, and once again we were discharged to come home on oxygen (1/16L prescribed, but we did have to adjust depending on her sats). Verity had an IV in the hospital, but we were given a prescription for "oral" (i.e. G-tube) antibiotics at home. Thankfully she did not have any adverse reactions to the medicine.
It has been about 3 weeks since our hospital visit, and we have had a number of appointments since then (many unrelated to her pneumonia). Overall she is doing quite well, although she has been noticeably sleepy (regrettably not always during the night--hence my writing this at 2:30am!). Every now and then we see a low grade fever, and she has had days where getting a smile out of her is nigh impossible. But for all the fussy periods, she does have her happy, playful times as well, and thankfully her vitals keep looking good. She came off oxygen maybe a week or so after we got home from the hospital. (These weeks have been a blur with all our appointments, which I will detail in a separate post.)
I am thankful Verity seems to be robust and healthy enough to bounce back so well from such a scary illness. But I confess that I will never be able to shake the sense of dread that looms over us whenever we are making a hurried trip to the hospital--we've seen too many babies fly to heaven to take for granted that we will always be able to bring her home.
Tuesday, January 9, 2018
Pulmonology
Today, a visit to the newest member of Verity's Village: Dr. Tina, our pulmonologist. After chatting with other Trisomy moms, I am kind of amazed that we haven't made it into the Breathing Institute before now, especially since we already did a sleep study! I guess typically those are ordered and evaluated by a pulmonologist, but anyway, the important thing is we had a study AND that today we had the opportunity to speak with another specialist. Even though Verity has had oxygen at night, we have not noticed ANY improvement in her sleep patterns, and if anything, it has been even more difficult because she hates the nasal cannula!
Here are the notes from today's visit...but first, the exciting news: Verity is ALMOST to 13 pounds! Her weight today was 12lb, 15.4oz, a nearly 10-ounce gain since December 19 when we discovered she was losing weight. So, the continuous feed is working! (She has had a few vomiting episodes, but not nearly the volume as before--we can tell she still suffers from reflux, but at least she is keeping most of her food down.)
Dr. Tina would like Verity to go back to the sleep clinic, this time with the intention of looking at CPAP/BiPAP. She thinks we can do better with having Verity do some desensitization with a mask prior to going in, and then having the specialists adjust settings to see what works best for Verity. My only fear with all of this is...how will Verity suck on her pacifier with a mask?! LOL But hopefully if she is able to breathe well, she can sleep deeply and not wake every few minutes wanting her pacifier...?
Because Verity has not had any respiratory infections or pneumonia, Dr. Tina doesn't feel she needs a bronchoscopy at this time, something that most Trisomy 18 kiddos end up having (this is a test that requires sedation). I was reluctant to push for one just for the sake of having one--I really like this doctor and trust her judgment.
Finally, she is putting in a request for us to get another pulse-oximeter, which we haven't had since we turned ours in when we left Omaha. Our ENT didn't seem to think we needed one, even though Verity's sleep study showed her sats went as low as 74%!! So, I will be glad to have one so we can monitor her more regularly.
Here are the notes from today's visit...but first, the exciting news: Verity is ALMOST to 13 pounds! Her weight today was 12lb, 15.4oz, a nearly 10-ounce gain since December 19 when we discovered she was losing weight. So, the continuous feed is working! (She has had a few vomiting episodes, but not nearly the volume as before--we can tell she still suffers from reflux, but at least she is keeping most of her food down.)
Dr. Tina would like Verity to go back to the sleep clinic, this time with the intention of looking at CPAP/BiPAP. She thinks we can do better with having Verity do some desensitization with a mask prior to going in, and then having the specialists adjust settings to see what works best for Verity. My only fear with all of this is...how will Verity suck on her pacifier with a mask?! LOL But hopefully if she is able to breathe well, she can sleep deeply and not wake every few minutes wanting her pacifier...?
Because Verity has not had any respiratory infections or pneumonia, Dr. Tina doesn't feel she needs a bronchoscopy at this time, something that most Trisomy 18 kiddos end up having (this is a test that requires sedation). I was reluctant to push for one just for the sake of having one--I really like this doctor and trust her judgment.
Finally, she is putting in a request for us to get another pulse-oximeter, which we haven't had since we turned ours in when we left Omaha. Our ENT didn't seem to think we needed one, even though Verity's sleep study showed her sats went as low as 74%!! So, I will be glad to have one so we can monitor her more regularly.
Thursday, March 16, 2017
Rooming In
Today has been a practice-taking-care-of-Verity day without much help or intervention from the nurses (who are certainly available if we need anything). We chose to stay in our current room--when I learned that I didn't HAVE to move across the hall, well, that was a no-brainer. Why make more work for ourselves (not to mention the cleaning staff)?! We've been doing quite well all day! Officially we only needed to be on our own for 8 hours, but since the nurses aren't allowed to use our home pump, I'll be taking the night shift as well, so I will really get a feel for what it will be like to be on full-time Verity duty!
Verity's hearing screening was early this morning. It wasn't terribly conclusive; they will give us a "referral," which basically means their equipment wasn't able to determine that her hearing is "normal." This isn't too surprising; her ear canals are pretty tiny still. She will be screened again sometime in the next month or two, and if those results indicate any issues, we'll get a referral right then and there and go directly to an appointment with a specialist.
Meanwhile, the doctor checked in on us to see if we felt comfortable with a discharge tomorrow morning, to which we gave a resounding YES! Dr. Doom-and-Gloom (with whom I had an unfortunate consultation in November) will be on duty this weekend...I don't particularly want to stay in the NICU long enough to have to deal with him. (Although perhaps it would be good for him to meet Verity.) God in His sovereignty directed Verity's arrival to happen a couple of days after Dr. D&G completed his two-week rotation in the NICU; I am so incredibly thankful for Dr. A, who is so personable and compassionate and was the perfect fit for supporting our family and Verity. I wish she could be the one here to discharge us, but Dr. F is a nice enough doctor.
Anyway. Back to our "rooming in" experience. We totally have got this feeding thing DOWN! You can see proof of this in Verity's perfectly content demeanor:
She has been a dream baby! She has a bit of wake time around her feeds/diaper changes and has slept great. She fusses a bit but not much, and I've been able to do some "recreational nursing" times more so today than over the last few days, as she was extremely sleepy. Maybe in a later post I'll feature the home feeding pump for any inquiring minds who want to know, but I'm trying to keep this fairly brief!
Other than the feeding pump, we've also been using our pulse oximeter to monitor Verity's heart rate and oxygen saturations. Let me tell you, we will NOT be able to sleep through THAT alarm, lol. She's had just a few dips into the upper 80s but then it has climbed back up to the 90s very quickly, so thankfully that loud alarm only beeps 2-3 times. We have the electric suction machine on hand but haven't had to do anything beyond using a bulb syringe to get some boogers out after a few sneezes. :-) We can use the pulse oximeter as often as we like--definitely while we are sleeping so that we CAN sleep, and likely during the day if we are distracted with schooling or other activities while Verity naps nearby. But we don't HAVE to have it on all the time, and I very much am looking forward to holding our baby and allowing others to hold her without worrying about all these CORDS. Now...if we can just figure out how to deal with that feeding tube! I may end up taping it to her back in between feedings...any suggestions from folks who have done this before?!
I've heard good reports from the speech tournament our oldest two kids participated in this week. They drove home this evening with their grandma, who took over chaperone duty, allowing Ted to be home with the other 6 kids, driving back and forth to the hospital daily. Arden and Kenna watched the younger set so Ted could come to the hospital for the afternoon and be part of this rooming in experience. We are all incredibly excited that we will be reunited at HOME tomorrow!!! Oh, happy, happy day!!
Verity's hearing screening was early this morning. It wasn't terribly conclusive; they will give us a "referral," which basically means their equipment wasn't able to determine that her hearing is "normal." This isn't too surprising; her ear canals are pretty tiny still. She will be screened again sometime in the next month or two, and if those results indicate any issues, we'll get a referral right then and there and go directly to an appointment with a specialist.
Meanwhile, the doctor checked in on us to see if we felt comfortable with a discharge tomorrow morning, to which we gave a resounding YES! Dr. Doom-and-Gloom (with whom I had an unfortunate consultation in November) will be on duty this weekend...I don't particularly want to stay in the NICU long enough to have to deal with him. (Although perhaps it would be good for him to meet Verity.) God in His sovereignty directed Verity's arrival to happen a couple of days after Dr. D&G completed his two-week rotation in the NICU; I am so incredibly thankful for Dr. A, who is so personable and compassionate and was the perfect fit for supporting our family and Verity. I wish she could be the one here to discharge us, but Dr. F is a nice enough doctor.
Anyway. Back to our "rooming in" experience. We totally have got this feeding thing DOWN! You can see proof of this in Verity's perfectly content demeanor:
She has been a dream baby! She has a bit of wake time around her feeds/diaper changes and has slept great. She fusses a bit but not much, and I've been able to do some "recreational nursing" times more so today than over the last few days, as she was extremely sleepy. Maybe in a later post I'll feature the home feeding pump for any inquiring minds who want to know, but I'm trying to keep this fairly brief!
Other than the feeding pump, we've also been using our pulse oximeter to monitor Verity's heart rate and oxygen saturations. Let me tell you, we will NOT be able to sleep through THAT alarm, lol. She's had just a few dips into the upper 80s but then it has climbed back up to the 90s very quickly, so thankfully that loud alarm only beeps 2-3 times. We have the electric suction machine on hand but haven't had to do anything beyond using a bulb syringe to get some boogers out after a few sneezes. :-) We can use the pulse oximeter as often as we like--definitely while we are sleeping so that we CAN sleep, and likely during the day if we are distracted with schooling or other activities while Verity naps nearby. But we don't HAVE to have it on all the time, and I very much am looking forward to holding our baby and allowing others to hold her without worrying about all these CORDS. Now...if we can just figure out how to deal with that feeding tube! I may end up taping it to her back in between feedings...any suggestions from folks who have done this before?!
I've heard good reports from the speech tournament our oldest two kids participated in this week. They drove home this evening with their grandma, who took over chaperone duty, allowing Ted to be home with the other 6 kids, driving back and forth to the hospital daily. Arden and Kenna watched the younger set so Ted could come to the hospital for the afternoon and be part of this rooming in experience. We are all incredibly excited that we will be reunited at HOME tomorrow!!! Oh, happy, happy day!!
Tuesday, March 14, 2017
Information Overload!
Happy two-week birthday, Verity! It's amazing to think of all that has happened in two very long, short weeks. As we wrap up Day 15 here in the NICU, I'm finally getting some quiet time to chronicle today's happenings. First, though, a gratuitous shot of our very-much-compatible-with-life baby girl. Ain't she something?!
It's amazing how even a few ounces of weight gain can make a wee one look so much more filled out! As of last night, Verity was 5lbs, 7 oz, up 4 ounces from her birth weight. Tonight, she was 5 lbs, 10oz! Wowza!
Last week we were hearing optimistic ideas about us heading home Monday or Tuesday of this week. That is obviously not happening, but given our circumstances, I am quite all right with staying put a few more days. Here's today's story summed up in a single photo:
Does that make your brain explode? Because part of me wants to walk away rather than have to deal with all of those cords. But the rational part, the part that tells me to take a deep breath because WE CAN DO THIS, reminds me that these machines represent LIFE for Verity. And this afternoon in the NICU was all about the machines.
First, though, we squeezed in some regular ol' family time. Ted brought 6 kids to the NICU in the late morning. (Our older two are with my mother-in-law at a speech and debate tournament this week.) Rhema had a chance to "hold" her baby sister for the first time...stinkin' cute:
I took Arden, our 13yo son, out of the NICU for a surprise milkshake treat so I could spend some one-on-one time with him. I got to tell him personally how much I appreciated hearing various reports about how amazingly helpful he has been with his siblings. He really has a gift with younger children! And since Charis and Tobin have been away so much with their school and church activities, Arden has had to pitch in extra to help out. I love that kid...and yes, I can still call him a kid, even though he's taller than I am and starting to shave...! Oy! And I noticed today that his voice is deeper. What the heck?! When did this happen???!
After we returned to the NICU, I finally got my lunch and had some time to discuss some things with Ted; we hadn't even begun learning about the aforementioned machines, but our heads were already spinning from dealing with other matters. Our pastor joined us in the family lounge for a short visit, having come to the hospital to pray with another family, and it was perfect timing and a much needed chance to talk and pray with him about some joys as well as concerns.
Meanwhile, our case worker had been busy behind the scenes doing paperwork, making phone calls, and setting up training times for us. First up, training with respiratory therapists on how to use two machines that will help us monitor and care for Verity: a pulse oximeter, which will help monitor her heart rate and oxygen saturations (allowing us to sleep more easily at night and monitor her at times when she may not be in the room with us), and an electric suction machine. A bulb syringe should work fine when things are "normal," but in the event Verity aspirates and we need to clear her out so she can breathe, this suction machine will be good to have. We anticipate it will be an "in case of emergency" tool and not something we will use terribly frequently, but after our research and hearing from other T18 parents, we felt it would be important to have at home. Thankfully our doctor was happy to prescribe whatever we felt we needed to take Verity home, and our case worker handled the paperwork for us.
The respiratory training took close to an hour. By time it was over, it was 4pm, and our littles were done. They had been so very good; we kept Seanin and Rhema in the conference room with us and let them color while we listened and asked questions and signed papers. The others were in the family lounge probably watching stupid cartoons. But since Ted had arrived five hours earlier, it had indeed been a long afternoon for them all, so they headed home, leaving me to consult with the doctor and then continue with feeding tube training.
The only real bit of news the doctor gave me was that he didn't want to hurry us out the door, but rather wait until everyone is comfortable that we are truly ready to go home and feel confident taking care of Verity on our own. He is thinking Friday for our discharge, which will give us a good 48 hours or so to practice with our own machines. I might even switch to one of the "rooming in" options tomorrow or Thursday night; rather than being in the NICU, I'd be just across the hall in a hotel type room, where the nurses are just a few feet away, allowing me to "practice" caring for Verity without any oversight unless I ask for help.
So the feeding tube training was me by myself with the nurse...at 4:30pm...and I had not had a nap all day--I listened as well as I could and absorbed a fair amount, I'm sure, but my eyes were starting to cross I was so tired! I do wish Ted could have been there, but he can join us for the 11am feeding tomorrow. I decided to wait to use our own feeding equipment until tomorrow when I can wake up and feel a bit more alert!
Between all the meetings and discussions, not to mention pumping sessions (because let's not forget that every 2.5-3 hours I have to sit and pump!), caring for Verity, and trying to do normal stuff like, oh, go to the bathroom and eat...I headed into the dinner hour feeling extremely exhausted and overwhelmed. Seriously, being Verity's mom is a full-time job. I KNOW there is a learning curve; I KNOW it will get easier after we practice. I fully believe that God allowed me to experience such dramatic feeding difficulties with Zaden and Rhema to help prepare me for this journey. I'd like to think that eventually Verity will be able to nurse, but the truth of the matter is that for the foreseeable future, she can't do that. Simply keeping Verity alive will require intense time, effort, and energy on my part and, to a certain extent, the rest of the family's as well.
But. Lord willing, it will be a season--Verity will grow bigger and stronger; I won't have to pump quite so frequently; maybe she will even be able to nurse. For now, I will do my best to squeeze in as much of this as possible...
It's amazing how even a few ounces of weight gain can make a wee one look so much more filled out! As of last night, Verity was 5lbs, 7 oz, up 4 ounces from her birth weight. Tonight, she was 5 lbs, 10oz! Wowza!
Last week we were hearing optimistic ideas about us heading home Monday or Tuesday of this week. That is obviously not happening, but given our circumstances, I am quite all right with staying put a few more days. Here's today's story summed up in a single photo:
Does that make your brain explode? Because part of me wants to walk away rather than have to deal with all of those cords. But the rational part, the part that tells me to take a deep breath because WE CAN DO THIS, reminds me that these machines represent LIFE for Verity. And this afternoon in the NICU was all about the machines.
First, though, we squeezed in some regular ol' family time. Ted brought 6 kids to the NICU in the late morning. (Our older two are with my mother-in-law at a speech and debate tournament this week.) Rhema had a chance to "hold" her baby sister for the first time...stinkin' cute:
I took Arden, our 13yo son, out of the NICU for a surprise milkshake treat so I could spend some one-on-one time with him. I got to tell him personally how much I appreciated hearing various reports about how amazingly helpful he has been with his siblings. He really has a gift with younger children! And since Charis and Tobin have been away so much with their school and church activities, Arden has had to pitch in extra to help out. I love that kid...and yes, I can still call him a kid, even though he's taller than I am and starting to shave...! Oy! And I noticed today that his voice is deeper. What the heck?! When did this happen???!
After we returned to the NICU, I finally got my lunch and had some time to discuss some things with Ted; we hadn't even begun learning about the aforementioned machines, but our heads were already spinning from dealing with other matters. Our pastor joined us in the family lounge for a short visit, having come to the hospital to pray with another family, and it was perfect timing and a much needed chance to talk and pray with him about some joys as well as concerns.
Meanwhile, our case worker had been busy behind the scenes doing paperwork, making phone calls, and setting up training times for us. First up, training with respiratory therapists on how to use two machines that will help us monitor and care for Verity: a pulse oximeter, which will help monitor her heart rate and oxygen saturations (allowing us to sleep more easily at night and monitor her at times when she may not be in the room with us), and an electric suction machine. A bulb syringe should work fine when things are "normal," but in the event Verity aspirates and we need to clear her out so she can breathe, this suction machine will be good to have. We anticipate it will be an "in case of emergency" tool and not something we will use terribly frequently, but after our research and hearing from other T18 parents, we felt it would be important to have at home. Thankfully our doctor was happy to prescribe whatever we felt we needed to take Verity home, and our case worker handled the paperwork for us.
The respiratory training took close to an hour. By time it was over, it was 4pm, and our littles were done. They had been so very good; we kept Seanin and Rhema in the conference room with us and let them color while we listened and asked questions and signed papers. The others were in the family lounge probably watching stupid cartoons. But since Ted had arrived five hours earlier, it had indeed been a long afternoon for them all, so they headed home, leaving me to consult with the doctor and then continue with feeding tube training.
The only real bit of news the doctor gave me was that he didn't want to hurry us out the door, but rather wait until everyone is comfortable that we are truly ready to go home and feel confident taking care of Verity on our own. He is thinking Friday for our discharge, which will give us a good 48 hours or so to practice with our own machines. I might even switch to one of the "rooming in" options tomorrow or Thursday night; rather than being in the NICU, I'd be just across the hall in a hotel type room, where the nurses are just a few feet away, allowing me to "practice" caring for Verity without any oversight unless I ask for help.
So the feeding tube training was me by myself with the nurse...at 4:30pm...and I had not had a nap all day--I listened as well as I could and absorbed a fair amount, I'm sure, but my eyes were starting to cross I was so tired! I do wish Ted could have been there, but he can join us for the 11am feeding tomorrow. I decided to wait to use our own feeding equipment until tomorrow when I can wake up and feel a bit more alert!
Between all the meetings and discussions, not to mention pumping sessions (because let's not forget that every 2.5-3 hours I have to sit and pump!), caring for Verity, and trying to do normal stuff like, oh, go to the bathroom and eat...I headed into the dinner hour feeling extremely exhausted and overwhelmed. Seriously, being Verity's mom is a full-time job. I KNOW there is a learning curve; I KNOW it will get easier after we practice. I fully believe that God allowed me to experience such dramatic feeding difficulties with Zaden and Rhema to help prepare me for this journey. I'd like to think that eventually Verity will be able to nurse, but the truth of the matter is that for the foreseeable future, she can't do that. Simply keeping Verity alive will require intense time, effort, and energy on my part and, to a certain extent, the rest of the family's as well.
But. Lord willing, it will be a season--Verity will grow bigger and stronger; I won't have to pump quite so frequently; maybe she will even be able to nurse. For now, I will do my best to squeeze in as much of this as possible...
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