We should **hopefully** be transferring back to Cape Fear Valley tomorrow morning. It isn't entirely set in stone just yet. Our home hospital (Cape Fear) has beds right now, but there's not guarantee that they'll have them in the morning. Also the timing is up in the air too. Mackenzie isn't concidered an emergency transport, so if there's an emergency it will come before Mac. I'm glad to finally be getting home. It'd be nice to sleep in my own bed again. :o)
I can honestly say that I'll miss a few things about UNC. First and foremost, I will miss their kangaroo chairs. They're these huge recliners that you can sit and cuddle your baby in. Oh my, they're ultra comfortable! I also have to admit I'll miss a couple of the nurses too. Not everyone we've ran into has been awful. For instance, Mackenzie's primary nurse (Anne) is a gem. If I could pack her in my suitcase and take her back to CFV I would in a heart beat! Something tells me Canadians don't like to be smuggled in suitcases though.
We won't be saying goodbye to UNC for good. Mackenzie will be transferred back in the next 6-8 weeks for a follow-up with ENT and nephrology. We'll actually be coming back to UNC quite often for check ups and stuff like that. The subspecialities (like ENT) here are really great. I'm very greatful for the excellent work they've done with Mackenzie. Andy and I are afraid to think what would have happened had she not been trached as quickly.
As a general update, Mackenzie is doing well. She's been having some issues with keeping down her food but since she has GERD (gastroesophogeal reflux disease), that's completely expected. She spit up on me earlier and I swear I thought she smiled afterward. The lil' stinker. She gets a little less than 2oz every 3 hours (53mL to be more specific). She's currently still on the ventilator but on extremely low settings. She only gets 10 support breaths each minute. The main reason she's on the vent is to keep a good pressure of oxygen going into her lungs - she's breathing on her own just fine. Once we get back home they'll work and seeing if we can get Mac off the vent. It's a toss up right now on whether they will be able to. She has a bad air leak with her trach because it's uncuffed... but if they cuff it, it could cause damage to her trachea. So yeah, we'll see how things go on that front. Mackenzie was also put on a quasi-permanent blood pressure med. Her systolics have been above 100 which is a bit too high for someone her size. Nephrology hasn't been able to find a cause so they're linking it to her prematurity - which is entirely reasonable. Mac is much more alert than she has been in ages. When she's awake she loves to stare at people and follow them with her eyes and head. She absolutely loves the soother Santa brought her for Christmas.
Anywho, I need to head off here and finish packing. Andy and I really appreciate all the love and support we've received over the past 4 months. It's been difficult, to say the least. It's nice to know that Mackenzie has touched so many hearts. :o)
Tuesday, December 30, 2008
Friday, December 26, 2008
Arg... Double Strollers!
For starters, Mac had a great Christmas. She was awake while Daddy held her and Mommy opened some of her presents. It looked like she really liked the smell of the Bert's Bee's baby wash! I took pics of her with her new gifts and I'll post them in the next day or two. We held back on opening 3 presents because Mackenzie was starting to fall asleep and we wanted something to open when she got back "home" (ie: to our home NICU). Overall, I think she had a great Christmas. She gave Andy his first present... baby puke. lol The poor girl has become a spitter on occasion and yacked on Andy midway through the present opening extravaganza. It was hilarious. :o)
As for updates, a lot has happened. Mac had to have two MRI's. The first was to see if there were any cysts anywhere else in her body. They detected a small cyst in about the same location as the hemangioma that they removed during her tracheostomy. They couldn't tell if it was located strictly in the airway or if it was part of a larger mass, so they had to repeat the MRI. Had it been part of something larger, the ENT doc had planned to leave it alone. Instead, it was just a small cyst in her airway that was pushing her vocal cords apart. They went in on Christmas Eve and lasered off some of the cyst but didn't want to remove too much in fear of damaging her vocal cords. It's stilgoing to be at least a year until the trach is removed, possibly longer depending on whether the hemangioma grows back.
Mac is on the ventilator and has been since her first surgery. They tried to put her on the trach collar twice now and she hasn't done very well. It's really not enough pressurized oxygen to keep her lungs expanded. The plan now is to wean her off onto perhaps a CPAP. We've had a respiratory therapist say that he didn't know if she'd be able to wean off the ventilator, but Andy and I have faith. We don't mind spending longer in the NICU if that means that Mac can successfully be weaned off the ventilator. She'll more than likely come home on some form of oxygen for her chronic lung disease... but perhaps in a year or so her lungs will have healed enough to not need it.
Andy and I are looking into buying a double stroller. With all the equipment Mackenzie will have, a single stroller just isn't going to cut it. There won't be enough room. Since she'll have tons of appointments (development clinic, pediatrician, pulmonary, ENT, etc), I need something with enough room to put all her medical equipment. We already have a single stroller travel system, so we can hopefully find a Graco double stroller that we can use our infant car seat with. When Mackenzie's 1 or 2 and is able to have her trach removed and is *hopefully* off oxygen, then we can go back to using our single stroller. Andy wants one of those JEEP strollers that has the cd player built in, but I think we'll go with something a little more conventional.
Oh, and we plan on learning sign language. We've already started looking for the videos ("Signing Times" thanks Sara and Amy!). Also we've started preparing to take her home. We're not sure when this will be (we're planning on a couple of months), but we've got lots of things that need to be done around the house now. We just prepared ourselves for one little beautiful baby, and now that wonderful baby will have her own grown up that tags along everywhere she goes! How do you prepare your self for a full time nurse? I mean on the one hand we've always got a babysitter (the price is a little ridiculous though) but there is also never any alone time. It's going to be kinda strange.
All in all, I think Andy ad I are coping with things pretty well. When you get the news that you're pregnant, you never expect things to be this way. Although we knew I probably wouldn't make it to term, we didn't know how early she would be or the complications that would arise. On one hand, though, the ENT who performed the laser surgery said that it was probably a good thing that Mackenzie didn't come right on time because of how large the hemangioma was. She may not have had an airway at all. Honestly, I can say that I'm not bitter about Mac's prematurity and I'm not bitter about her tracheostomy. While she may not be "perfect" in the ways that most parents think, to us she's as perfect as can be. I can't ask for more than the absolute blessing we've been given. Mackenzie really is something else. :o)
As for updates, a lot has happened. Mac had to have two MRI's. The first was to see if there were any cysts anywhere else in her body. They detected a small cyst in about the same location as the hemangioma that they removed during her tracheostomy. They couldn't tell if it was located strictly in the airway or if it was part of a larger mass, so they had to repeat the MRI. Had it been part of something larger, the ENT doc had planned to leave it alone. Instead, it was just a small cyst in her airway that was pushing her vocal cords apart. They went in on Christmas Eve and lasered off some of the cyst but didn't want to remove too much in fear of damaging her vocal cords. It's stilgoing to be at least a year until the trach is removed, possibly longer depending on whether the hemangioma grows back.
Mac is on the ventilator and has been since her first surgery. They tried to put her on the trach collar twice now and she hasn't done very well. It's really not enough pressurized oxygen to keep her lungs expanded. The plan now is to wean her off onto perhaps a CPAP. We've had a respiratory therapist say that he didn't know if she'd be able to wean off the ventilator, but Andy and I have faith. We don't mind spending longer in the NICU if that means that Mac can successfully be weaned off the ventilator. She'll more than likely come home on some form of oxygen for her chronic lung disease... but perhaps in a year or so her lungs will have healed enough to not need it.
Andy and I are looking into buying a double stroller. With all the equipment Mackenzie will have, a single stroller just isn't going to cut it. There won't be enough room. Since she'll have tons of appointments (development clinic, pediatrician, pulmonary, ENT, etc), I need something with enough room to put all her medical equipment. We already have a single stroller travel system, so we can hopefully find a Graco double stroller that we can use our infant car seat with. When Mackenzie's 1 or 2 and is able to have her trach removed and is *hopefully* off oxygen, then we can go back to using our single stroller. Andy wants one of those JEEP strollers that has the cd player built in, but I think we'll go with something a little more conventional.
Oh, and we plan on learning sign language. We've already started looking for the videos ("Signing Times" thanks Sara and Amy!). Also we've started preparing to take her home. We're not sure when this will be (we're planning on a couple of months), but we've got lots of things that need to be done around the house now. We just prepared ourselves for one little beautiful baby, and now that wonderful baby will have her own grown up that tags along everywhere she goes! How do you prepare your self for a full time nurse? I mean on the one hand we've always got a babysitter (the price is a little ridiculous though) but there is also never any alone time. It's going to be kinda strange.
All in all, I think Andy ad I are coping with things pretty well. When you get the news that you're pregnant, you never expect things to be this way. Although we knew I probably wouldn't make it to term, we didn't know how early she would be or the complications that would arise. On one hand, though, the ENT who performed the laser surgery said that it was probably a good thing that Mackenzie didn't come right on time because of how large the hemangioma was. She may not have had an airway at all. Honestly, I can say that I'm not bitter about Mac's prematurity and I'm not bitter about her tracheostomy. While she may not be "perfect" in the ways that most parents think, to us she's as perfect as can be. I can't ask for more than the absolute blessing we've been given. Mackenzie really is something else. :o)
Tuesday, December 23, 2008
Waiting on Santa Clause!
Andy and I are currently "arguing" over the color of Mackenzie's hair. I say she's a redhead... he says she's strawberry blonde. Is there a difference? Anyway, here's a few pics of Mac in her Christmas dress. She was snoozing away and could care less that it was her time to shine. Silly baby. :o) Mac loves her Christmas blanky! It's so soft and cuddly. She also enjoyed the x-mas dress her Nana got her.
Pics of Mac after her tracheostomy
Here are a few pictures of Mackenzie after her tracheostomy. She was pretty swollen from the fluids and completely knocked out. On the left side of her head you see where they put her IV in, and then you obviously have the trach itself on her neck. The lines on her chest with writting saying "left" and "right" are from the sutures that have now been removed.
Saturday, December 20, 2008
Christmas is right around the corner!
Andy and I called Santa to remind him that his gifts for Mac have to be NICU friendly, and we have to say we're pretty impressed. We webcammed with Mrs. Clause who showed us what they had decided on (in conjunction with a few other people).
Mrs. Clause went shopping with Frosty's wife and picked out a couple cute dresses and a sleeper. For a woman that wears the same outfit every day and another woman who wears just a scarf and hat year round, they did great. They even managed to find Mac the most adorable Calvin Klein blanky. It's light pink with brown satin trim.
Rudolph apparently nibbled a piece of wood into an angel ornament. It's Mackenzie's first Christmas ornament and we hope to keep up the tradition of yearly ornament giving. Andy and I have one for our first Christmas together and actually need to pick one out for our second. We'd ask Rudy to nibble another one but it seems he got a splinter in his gum and is under strict orders from the dentist to go on a grass-only diet to relieve the pain and inflammation. ((FYI - Rudy apparently is looking to retire from sleigh pulling and earn some extra money in ornament making. He's currently selling them at JoAnne's Fabric.))
Ironically enough, Pigpen (Charlie Brown's smelly friend) purchased a bottle of Burt's Bees baby shampoo and body wash. It smells delightful! We know Mac will like it and she'll be the envy of all the other babies. I think in return we'll send Pigpen a bar of Dove to call things even. :o)
Father Christmas got Mackenzie the Fisher Price Rainforest Soother for the side of her crib once we get back to Cape Fear Valley. In the meantime we can hold it up for Mac and let her look at it while we're still here. Silly guy forgot to get batteries for it so we had to run to WalMart in Durham and pick some up
Ralphy wanted to get Mac one of the official Red Ryder bb guns, but when Santa reminded him that Mackenzie could shoot her eye out, Ralphy picked out a couple cute pacis instead. Mac LOVES pacis and you could literally spend all day holding one in her mouth. Thank goodness Santa talked Ralphy out of the bb gun. I don't think the NICU would have approved. Ralphy also got her a paci pouch to keep her pacis in. Very stylish of him!
Tiny Tim managed to find a Lamb Chop puppet while shopping at the North Pole Mall. Andy and I think it's definitely a one-of-a-kind Christmas gift and give the crutched kid major kudos for navigating the mall during this time of year. I heard a rumor that he's looking to trade in his crutches for a Segway. Lazy bum.
Oh! Even the nasty old Grinch picked out a sleeper for Mackenzie to wear. Of course it's green, but it says "I love my Daddy" and has a pink butterfly on it. Andy has a feeling that his dog, Max, really bought it and put Grinch's name on it but I have faith in the grumpy guy.
So overall we're very pleased with the gifts Santa's bringing Mackenzie for Christmas. I believe the elves are still working on wrapping them. Andy and I will make sure to post pics of Mac unwrapping her x-mas presents!
Mrs. Clause went shopping with Frosty's wife and picked out a couple cute dresses and a sleeper. For a woman that wears the same outfit every day and another woman who wears just a scarf and hat year round, they did great. They even managed to find Mac the most adorable Calvin Klein blanky. It's light pink with brown satin trim.
Rudolph apparently nibbled a piece of wood into an angel ornament. It's Mackenzie's first Christmas ornament and we hope to keep up the tradition of yearly ornament giving. Andy and I have one for our first Christmas together and actually need to pick one out for our second. We'd ask Rudy to nibble another one but it seems he got a splinter in his gum and is under strict orders from the dentist to go on a grass-only diet to relieve the pain and inflammation. ((FYI - Rudy apparently is looking to retire from sleigh pulling and earn some extra money in ornament making. He's currently selling them at JoAnne's Fabric.))
Ironically enough, Pigpen (Charlie Brown's smelly friend) purchased a bottle of Burt's Bees baby shampoo and body wash. It smells delightful! We know Mac will like it and she'll be the envy of all the other babies. I think in return we'll send Pigpen a bar of Dove to call things even. :o)
Father Christmas got Mackenzie the Fisher Price Rainforest Soother for the side of her crib once we get back to Cape Fear Valley. In the meantime we can hold it up for Mac and let her look at it while we're still here. Silly guy forgot to get batteries for it so we had to run to WalMart in Durham and pick some up
Ralphy wanted to get Mac one of the official Red Ryder bb guns, but when Santa reminded him that Mackenzie could shoot her eye out, Ralphy picked out a couple cute pacis instead. Mac LOVES pacis and you could literally spend all day holding one in her mouth. Thank goodness Santa talked Ralphy out of the bb gun. I don't think the NICU would have approved. Ralphy also got her a paci pouch to keep her pacis in. Very stylish of him!
Tiny Tim managed to find a Lamb Chop puppet while shopping at the North Pole Mall. Andy and I think it's definitely a one-of-a-kind Christmas gift and give the crutched kid major kudos for navigating the mall during this time of year. I heard a rumor that he's looking to trade in his crutches for a Segway. Lazy bum.
Oh! Even the nasty old Grinch picked out a sleeper for Mackenzie to wear. Of course it's green, but it says "I love my Daddy" and has a pink butterfly on it. Andy has a feeling that his dog, Max, really bought it and put Grinch's name on it but I have faith in the grumpy guy.
So overall we're very pleased with the gifts Santa's bringing Mackenzie for Christmas. I believe the elves are still working on wrapping them. Andy and I will make sure to post pics of Mac unwrapping her x-mas presents!
Tuesday, December 16, 2008
Maybe if I cry quietly, no one will know.
This has been a stressful week and things don't seem to be getting any easier.
The quality of care at Chapel Hill's Newborn Critical Care Center (their version of a NICU) is extremely poor. If I ask the neonatologists a question, I'm told to ask the ENT doc... but if I ask the ENT doc, then I'm told to ask the neos. So I'm basically getting the run around and no one can give me an answer - or if they do, they're conflicting answers. I've walked in (more than once) to find trash in Mackenzie's bed. We're talking latex gloves, wrappers to equipment, empty saline bottles, used 4x4s, etc. The very first time I saw it, I not-so-politely asked the nurse "Is there a reason this trash is in her bed?". She cleaned it up promptly, and from then on I make certain to point out anything that's in there and doesn't belong. Who the hell leaves a latex glove a few inches away from a baby's head? Mackenzie could have easily grabbed it. This hospital also likes to push babies out of the NICU by either giving them a g-tube to eat from and discharging or transferring them to the PICU. Needless to say I've made it painful clear that we WILL be transferring back to Cape Fear Valley. Now when that will happen is still unclear.
Mackenzie's first trach change today went well. The ENT doctor that performed the surgery was the one who changed it and he said everything looks great. The nurses got the "okay" to do normal trach care from here on out which means replacing ties twice a day, changing the trach once a day, etc.
The neonatologist ordered an echocardiogram after I persisted on it. They noticed two things that were slightly out of the ordinary that are related to her blood pressure (forgive me because I can't remember exactly what they are off the top of my head). A specialist (possibly cardiologist) is going to take a look at Mac tomorrow and decide what permanent blood pressure med to put her.
So from my understanding, there are a couple things left to do before we can transfer. First, and foremost, they have to wean Mac off her pain medicine. They also want her to see a speech therapist who will do a swallow study to see if it is safe for Mackenzie to eat. There is a possibility that she could aspirate some of the food, which would be a big no-no. If the speech therapist decides it's unsafe to nipple feed, then she'll have surgery to get a G-tube placed and we'll have to give her gauvage feedings.
The pathology on the cyst came back it was a capillary hemangioma. Lots of kids get them on their skin and they're considered stork bites. Unfortunately, they tend to grow and worsen over the course of a year and then they shrink and go away. Because of this, Mackenzie will have her trach in for at least a year - possibly longer depending on what future scopes show.
So this means I will go a year without being able to hear my daughter laugh or cry. When other babies are babbling away, I'll hear silence. It breaks my heart in two and I'm not sure how I'll be able to handle it. It makes me angry at so many women who take things for granted. When a mother wakes up in the middle of the night to a hungry, fussy baby I'm sure she doesn't realize just how lucky she is. Running a quick errand is out of the question because I won't be able to drive by myself - a trach trained adult has to be at Mackenzie's side at all times, especially in the car. We'll have home health nurses helping raise our child. Mac will also be constantly connected to monitors just like she would be in the NICU. It's a lot to take in and a lot to cope with.
On the bright side, Mackenzie is as happy and content as could be. She's responding to me and Andy's voices. When she hears us her eyes get big and she searches for our faces. If her hands are free, Mack reaches toward us too. :o) It's absolutely adorable and I can't wait until we're able to hold her again. She's also starting to learn how to smile. She's not quite smiling yet, but I say give it a week or so and she'll get the hang of it. Mac loves to be talked to and enjoys a good hand holding session. For a child that has been through so much in her life, she has the most amazing personality.
We took a few pics of Mac with her trach in and I'll have to upload them tomorrow sometime. They're a little scary looking because Mac was passed out thanks to the pain meds, and she has a scalp IV in. The nurses will be taking her Christmas picture soon too. Andy's going to bring up her Chrstimas dress from home to put her in. I think Santa comes to visit and takes pics with the babies as well, but I'm not sure if they're doing that this year.
Alright... this is way long. I need to go collect myself and dry my tears before I go see Mac again tonight. It feels lonely here without Andy but he'll drive back up on Wednesday night and then again on Friday. I can't wait to have him back.
The quality of care at Chapel Hill's Newborn Critical Care Center (their version of a NICU) is extremely poor. If I ask the neonatologists a question, I'm told to ask the ENT doc... but if I ask the ENT doc, then I'm told to ask the neos. So I'm basically getting the run around and no one can give me an answer - or if they do, they're conflicting answers. I've walked in (more than once) to find trash in Mackenzie's bed. We're talking latex gloves, wrappers to equipment, empty saline bottles, used 4x4s, etc. The very first time I saw it, I not-so-politely asked the nurse "Is there a reason this trash is in her bed?". She cleaned it up promptly, and from then on I make certain to point out anything that's in there and doesn't belong. Who the hell leaves a latex glove a few inches away from a baby's head? Mackenzie could have easily grabbed it. This hospital also likes to push babies out of the NICU by either giving them a g-tube to eat from and discharging or transferring them to the PICU. Needless to say I've made it painful clear that we WILL be transferring back to Cape Fear Valley. Now when that will happen is still unclear.
Mackenzie's first trach change today went well. The ENT doctor that performed the surgery was the one who changed it and he said everything looks great. The nurses got the "okay" to do normal trach care from here on out which means replacing ties twice a day, changing the trach once a day, etc.
The neonatologist ordered an echocardiogram after I persisted on it. They noticed two things that were slightly out of the ordinary that are related to her blood pressure (forgive me because I can't remember exactly what they are off the top of my head). A specialist (possibly cardiologist) is going to take a look at Mac tomorrow and decide what permanent blood pressure med to put her.
So from my understanding, there are a couple things left to do before we can transfer. First, and foremost, they have to wean Mac off her pain medicine. They also want her to see a speech therapist who will do a swallow study to see if it is safe for Mackenzie to eat. There is a possibility that she could aspirate some of the food, which would be a big no-no. If the speech therapist decides it's unsafe to nipple feed, then she'll have surgery to get a G-tube placed and we'll have to give her gauvage feedings.
The pathology on the cyst came back it was a capillary hemangioma. Lots of kids get them on their skin and they're considered stork bites. Unfortunately, they tend to grow and worsen over the course of a year and then they shrink and go away. Because of this, Mackenzie will have her trach in for at least a year - possibly longer depending on what future scopes show.
So this means I will go a year without being able to hear my daughter laugh or cry. When other babies are babbling away, I'll hear silence. It breaks my heart in two and I'm not sure how I'll be able to handle it. It makes me angry at so many women who take things for granted. When a mother wakes up in the middle of the night to a hungry, fussy baby I'm sure she doesn't realize just how lucky she is. Running a quick errand is out of the question because I won't be able to drive by myself - a trach trained adult has to be at Mackenzie's side at all times, especially in the car. We'll have home health nurses helping raise our child. Mac will also be constantly connected to monitors just like she would be in the NICU. It's a lot to take in and a lot to cope with.
On the bright side, Mackenzie is as happy and content as could be. She's responding to me and Andy's voices. When she hears us her eyes get big and she searches for our faces. If her hands are free, Mack reaches toward us too. :o) It's absolutely adorable and I can't wait until we're able to hold her again. She's also starting to learn how to smile. She's not quite smiling yet, but I say give it a week or so and she'll get the hang of it. Mac loves to be talked to and enjoys a good hand holding session. For a child that has been through so much in her life, she has the most amazing personality.
We took a few pics of Mac with her trach in and I'll have to upload them tomorrow sometime. They're a little scary looking because Mac was passed out thanks to the pain meds, and she has a scalp IV in. The nurses will be taking her Christmas picture soon too. Andy's going to bring up her Chrstimas dress from home to put her in. I think Santa comes to visit and takes pics with the babies as well, but I'm not sure if they're doing that this year.
Alright... this is way long. I need to go collect myself and dry my tears before I go see Mac again tonight. It feels lonely here without Andy but he'll drive back up on Wednesday night and then again on Friday. I can't wait to have him back.
Friday, December 12, 2008
We weren't expecting this!
We're in Chapel Hill and staying at the Ronald McDonald House.
The transport went well. The transport team said that Mackenzie handled things like a champ and they didn't have any problems. They ended up having to take her by ground because of the weather here, so it took about a 2hr drive.
Dr. Laughon is the neonatologist in charge of Mac's care right now. The first day I absolutely hated him. Our nickname for him is Doogie Houser, btw. Anywho... he decided to take Mackenzie off the ventilator and put her on a nasal cannula to see how she would tolerate it. He put her on 1 liter of flow and they increased it as Mackenzie's work of breathing increased. Personally, I didn't agree with this decision when it happened and looking back I still don't agree with it. I don't understand why he wanted to put a child who was intubated due to an airway obstruction back on a high flow cannula so quickly. He said he wanted to see how she did to get an idea of how to treat her... but of course I'm more of a cautious type and would rather they had tried the CPAP first.
So yesterday the bronch team and pulmonary team took Mackenzie down to the operating room to do two scopes. The bronch team used a flexible scope to look down into her airway while the pulmonary team used a rigid scope to look at her lungs. While in the OR (operating room) they discovered a LARGE cyst located just below her vocal cords. There was only about 1 millimeter of room for her to pass air through her airway because of the cyst. The ENT specialist managed to get out the cyst, but in doing so he had to give Mackenzie a tracheotomy tube so Mac could breathe. It was an emergency procedure that I consented to in the event that the need arose. Apparently it did.
The cyst has been sent for pathology testing and we should hopefully know what it is in about a week or so. The trach tube will most likely be left in through the winter season because of the risk of RSV, flu, etc. Depending on what type of cyst it is will greatly impact on how long the trach has to be left in. Right now there's just no telling. It could just be a few months, it could be a year... it's all up in the air until pathology comes back. In about 4 days or so the ENT will go back in and do another scope to see if there were any residuals left of the cyst and see how things are healing.
In the meantime, we will be here for at least 2 weeks. Andy and I both have to learn to care for the trach tube and all that. Hopefully if all the tests come back and Mackenzie is doing well, we'll be headed back to Cape Fear Valley (our home hospital/NICU). Once there we'll work on getting Mackenzie to nipple feed. There is a great chance that she may not be able to because of the trach tube. That's something you can feel as you're swallowing, so babies have a tendency not to want to swallow - however, her chances of being able to successfully nipple feed are greater because she's done it before. In the event that Mac can't nipple feed and that is the one thing keeping us from taking her home from the hospital, they will go in and surgically place a g-tube in her stomach for us to pump feedings into. I've expressed my concern with this being an absolute last resort and the neonatologists are okay with it.
Obviously all of this means a lot more specialists helping us with Mackenzie's care. We'll be frequently coming back to see the pulmonary specialists here. We may have to get a speech therapist. One of the major (and many) downfalls of having a trach tube is that the vocal cords aren't used because the tube is inserted beneath them. Because of this, Mackenzie can't make any noises. Depending on how long the tube has to be left in, this may cause speech delays and issues later on down the road. I must say I already miss hearing our baby girl cry.
Mackenzie's currently pretty sedated and they plan on keeping her this way until about Monday. They don't want her in pain, nor do they want her moving too much with a fresh tube in. The neonatologists are looking into starting her feedings again today, and I've requested the keep the same feeding regimen that Mackenzie's had her entire life - that is 1/3 breast milk and 2/3 formula (30cal similac to be specific). Chapel Hill generally gives all breast milk and a human fortifier to get the calorie content up where it needs to be. Thankfully Dr. Laughon doesn't have a problem with keeping her feedings the same, especially since that's all she's had since she was born.
Needless to say, Andy and I were not expecting this. We have a lot to learn and research. Hopefully the rest of our time here will go smoothly and we'll have a safe and successful trip back home. While the Ronald McDonald house isn't horrid, it's definitely not like being at home. I also like Cape Fear Valley's NICU a hell of a lot better. There's not so much confusion and the nurses and doctors have better interpersonal skills. (I think that's a nice way of putting it, right?)
Anyway, I'm going to head off here. We have Internet access, albeit incredible SLOW access. I will be updating as more information becomes available... and as I have time.
The transport went well. The transport team said that Mackenzie handled things like a champ and they didn't have any problems. They ended up having to take her by ground because of the weather here, so it took about a 2hr drive.
Dr. Laughon is the neonatologist in charge of Mac's care right now. The first day I absolutely hated him. Our nickname for him is Doogie Houser, btw. Anywho... he decided to take Mackenzie off the ventilator and put her on a nasal cannula to see how she would tolerate it. He put her on 1 liter of flow and they increased it as Mackenzie's work of breathing increased. Personally, I didn't agree with this decision when it happened and looking back I still don't agree with it. I don't understand why he wanted to put a child who was intubated due to an airway obstruction back on a high flow cannula so quickly. He said he wanted to see how she did to get an idea of how to treat her... but of course I'm more of a cautious type and would rather they had tried the CPAP first.
So yesterday the bronch team and pulmonary team took Mackenzie down to the operating room to do two scopes. The bronch team used a flexible scope to look down into her airway while the pulmonary team used a rigid scope to look at her lungs. While in the OR (operating room) they discovered a LARGE cyst located just below her vocal cords. There was only about 1 millimeter of room for her to pass air through her airway because of the cyst. The ENT specialist managed to get out the cyst, but in doing so he had to give Mackenzie a tracheotomy tube so Mac could breathe. It was an emergency procedure that I consented to in the event that the need arose. Apparently it did.
The cyst has been sent for pathology testing and we should hopefully know what it is in about a week or so. The trach tube will most likely be left in through the winter season because of the risk of RSV, flu, etc. Depending on what type of cyst it is will greatly impact on how long the trach has to be left in. Right now there's just no telling. It could just be a few months, it could be a year... it's all up in the air until pathology comes back. In about 4 days or so the ENT will go back in and do another scope to see if there were any residuals left of the cyst and see how things are healing.
In the meantime, we will be here for at least 2 weeks. Andy and I both have to learn to care for the trach tube and all that. Hopefully if all the tests come back and Mackenzie is doing well, we'll be headed back to Cape Fear Valley (our home hospital/NICU). Once there we'll work on getting Mackenzie to nipple feed. There is a great chance that she may not be able to because of the trach tube. That's something you can feel as you're swallowing, so babies have a tendency not to want to swallow - however, her chances of being able to successfully nipple feed are greater because she's done it before. In the event that Mac can't nipple feed and that is the one thing keeping us from taking her home from the hospital, they will go in and surgically place a g-tube in her stomach for us to pump feedings into. I've expressed my concern with this being an absolute last resort and the neonatologists are okay with it.
Obviously all of this means a lot more specialists helping us with Mackenzie's care. We'll be frequently coming back to see the pulmonary specialists here. We may have to get a speech therapist. One of the major (and many) downfalls of having a trach tube is that the vocal cords aren't used because the tube is inserted beneath them. Because of this, Mackenzie can't make any noises. Depending on how long the tube has to be left in, this may cause speech delays and issues later on down the road. I must say I already miss hearing our baby girl cry.
Mackenzie's currently pretty sedated and they plan on keeping her this way until about Monday. They don't want her in pain, nor do they want her moving too much with a fresh tube in. The neonatologists are looking into starting her feedings again today, and I've requested the keep the same feeding regimen that Mackenzie's had her entire life - that is 1/3 breast milk and 2/3 formula (30cal similac to be specific). Chapel Hill generally gives all breast milk and a human fortifier to get the calorie content up where it needs to be. Thankfully Dr. Laughon doesn't have a problem with keeping her feedings the same, especially since that's all she's had since she was born.
Needless to say, Andy and I were not expecting this. We have a lot to learn and research. Hopefully the rest of our time here will go smoothly and we'll have a safe and successful trip back home. While the Ronald McDonald house isn't horrid, it's definitely not like being at home. I also like Cape Fear Valley's NICU a hell of a lot better. There's not so much confusion and the nurses and doctors have better interpersonal skills. (I think that's a nice way of putting it, right?)
Anyway, I'm going to head off here. We have Internet access, albeit incredible SLOW access. I will be updating as more information becomes available... and as I have time.
Tuesday, December 9, 2008
Leaving for Chapel Hill tomorrow
It's official - Chapel Hill has a bed space designated for Mackenzie and they will be flying to pick her up tomorrow morning. If the weather is really bad (which it's supposed to storm), then they'll take her via ambulance. We don't have an exact time on when they'll be coming, but we do know it will be tomorrow.
The case manager at Cape Fear will be contacting the case manager at Chapel Hill, who will in turn do a referral for their Ronald McDonald house. Hopefully they have a room available for us.
Not much else has changed. Mackenzie is still on the vent and they're continuing her meds as before. I'll update as soon as we get back, or at the very least as soon as I get internet access.
The case manager at Cape Fear will be contacting the case manager at Chapel Hill, who will in turn do a referral for their Ronald McDonald house. Hopefully they have a room available for us.
Not much else has changed. Mackenzie is still on the vent and they're continuing her meds as before. I'll update as soon as we get back, or at the very least as soon as I get internet access.
Going to Chapel Hill
I've decided to start camping out at Mackenzie's bedside and spending the entire day with her... at least until she gets specific nurses who deal with her on a routine basis. A lot of the times it's difficult to know her "cues" if you haven't dealt with her before.
Anyway, shortly after I got there Mackenzie started crying but couldn't catch her breath so she panicked. In doing so, her oxygen saturations dropped to the 50s along with her heart rate. She wasn't passing air into her lungs. Two nurses, two respiratory therapists, and a neonatologist were there trying to bring her back up. They put her on CPAP on the max settings and Mackenzie was still lingering, so they were thinking of putting her the vent. Mackenzie managed to stabilize and Dr. Cameron wanted to give her a chance to calm down before intubating her.
They then did a blood gas to see how the air was circulating in her lungs and it was extremely poor. They gave her until midnight to correct the problem before intubation. Andy and I went back to the hospital for her hands-on at 9 last night and once again Mac was falling. She was on the max of CPAP and had a blowby being held up to her and she still wasn't passing much air. The nurse and respiratory therapists finally managed to get her stabilized but I knew in my heart that it wasn't much longer until she went back on the vent. In fact, I told the nurse practitioner that I'd be expecting the call at midnight. She called at 1am to tell me that Mac went back on the vent.
With all that being said, there's a few things going on. Mackenzie's airway was not supporting her breathing which is why she was having difficulty passing air. I believe she also had a bronchospasm on top of it, which compounded the problem. The neonatologists are going to fly her to another hospital to get a complete evaluation to make sure that they have the right diagnosis (laryngomalacia) and to see if she might need corrective surgery. They went ahead and started antibiotics just incase it is an infection and also did some blood cultures to test for it as well.
To compound the problem, Mackenzie's blood pressure has been high lately and we addressed our concerns with Dr. Cameron. I told him that there's a family history and that I had been diagnosed at 13. Because of this he's also requesting a cardiolgoist team at Chapel Hill do a work up on her kidneys to make sure she doesn't have renal artery stenosis (which they thought I had). In the meantime they started her on blood pressure meds this morning (hydralazine).
As of this morning the hospital we're being transferred to (Chapel Hill) doesn't have any available beds, so it's a waiting game to see when we'll go out. We're thinking it will probably be tomorrow, but I'll discuss this more with the head medical director today. I'll probably also talk to the discharge nurse coordinator to get info on their Ronald McDonald type house. Hopefully they have a room available because it's a 2hr drive from here.
I will try to update again before I leave, but I'm not sure how much of a time crunch I'll be under. I promise to update as soon as possible.
Anyway, shortly after I got there Mackenzie started crying but couldn't catch her breath so she panicked. In doing so, her oxygen saturations dropped to the 50s along with her heart rate. She wasn't passing air into her lungs. Two nurses, two respiratory therapists, and a neonatologist were there trying to bring her back up. They put her on CPAP on the max settings and Mackenzie was still lingering, so they were thinking of putting her the vent. Mackenzie managed to stabilize and Dr. Cameron wanted to give her a chance to calm down before intubating her.
They then did a blood gas to see how the air was circulating in her lungs and it was extremely poor. They gave her until midnight to correct the problem before intubation. Andy and I went back to the hospital for her hands-on at 9 last night and once again Mac was falling. She was on the max of CPAP and had a blowby being held up to her and she still wasn't passing much air. The nurse and respiratory therapists finally managed to get her stabilized but I knew in my heart that it wasn't much longer until she went back on the vent. In fact, I told the nurse practitioner that I'd be expecting the call at midnight. She called at 1am to tell me that Mac went back on the vent.
With all that being said, there's a few things going on. Mackenzie's airway was not supporting her breathing which is why she was having difficulty passing air. I believe she also had a bronchospasm on top of it, which compounded the problem. The neonatologists are going to fly her to another hospital to get a complete evaluation to make sure that they have the right diagnosis (laryngomalacia) and to see if she might need corrective surgery. They went ahead and started antibiotics just incase it is an infection and also did some blood cultures to test for it as well.
To compound the problem, Mackenzie's blood pressure has been high lately and we addressed our concerns with Dr. Cameron. I told him that there's a family history and that I had been diagnosed at 13. Because of this he's also requesting a cardiolgoist team at Chapel Hill do a work up on her kidneys to make sure she doesn't have renal artery stenosis (which they thought I had). In the meantime they started her on blood pressure meds this morning (hydralazine).
As of this morning the hospital we're being transferred to (Chapel Hill) doesn't have any available beds, so it's a waiting game to see when we'll go out. We're thinking it will probably be tomorrow, but I'll discuss this more with the head medical director today. I'll probably also talk to the discharge nurse coordinator to get info on their Ronald McDonald type house. Hopefully they have a room available because it's a 2hr drive from here.
I will try to update again before I leave, but I'm not sure how much of a time crunch I'll be under. I promise to update as soon as possible.
Monday, December 8, 2008
A long road ahead...
Since the last blog we made progress, but then had to take a few steps back again.
Dr. Carter had reduced Mac's flow to 2 liters. The neos were agreeing that the flow wasn't necessarily helping Mackenzie's laryngomalacia, so they were working on slowly decreasing the flow. Today it's back up to 3 liters and Dr. Cameron spoke with me about possibly putting her back on CPAP. From what I gathered, it's just a matter of time before Mac goes back on it.
With respect to feedings, Mackenzie was ad lib... then reduced to nipple every feeding (as tolerated) every 3 hours... and then nipple every other feeding (as tolerated). Today they decided to stop the nippling and exclusively gauvage feed. If/when Mackenzie goes back on CPAP the nippling option will be out of the picture completely.
Mac's bone marrow is producing blood cells, but not at a high enough rate to support her needs. They've decided to go ahead and give her blood today rather than trying another round of epoetin shots. On the downside, this shuts down her bone marrow's ability to produce red blood cells so we'll be starting over in that aspect.
As the other doctors have said, Dr. Cameron reiterated that Mackenzie will be in the NICU for "quite a long time". He hopes that Mackenzie reads the book (so to speak) on laryngomalacia and is able to mature out of it. I discussed the possibility of surgery again, and he feels that it's not necessary just yet. They're going to give her time and as much support as necessary before considering that route.
On top of the laryngomalacia, the doctors and nurse practitioners have noticed that Mackenzie has moderate chronic lung disease (aka: BPD or bronchopulmonary dysplasia). They increaesd her lasix to twice a day to help keep the fluids out of her lungs. Even though most babies are off oxygen support by their due date, there are times when babies continue to have a need for it. Mackenzie will be 39 weeks gestation tomorrow.
So that's pretty much where we stand right now. We'll continue to keep everyone updated as things progress.
Dr. Carter had reduced Mac's flow to 2 liters. The neos were agreeing that the flow wasn't necessarily helping Mackenzie's laryngomalacia, so they were working on slowly decreasing the flow. Today it's back up to 3 liters and Dr. Cameron spoke with me about possibly putting her back on CPAP. From what I gathered, it's just a matter of time before Mac goes back on it.
With respect to feedings, Mackenzie was ad lib... then reduced to nipple every feeding (as tolerated) every 3 hours... and then nipple every other feeding (as tolerated). Today they decided to stop the nippling and exclusively gauvage feed. If/when Mackenzie goes back on CPAP the nippling option will be out of the picture completely.
Mac's bone marrow is producing blood cells, but not at a high enough rate to support her needs. They've decided to go ahead and give her blood today rather than trying another round of epoetin shots. On the downside, this shuts down her bone marrow's ability to produce red blood cells so we'll be starting over in that aspect.
As the other doctors have said, Dr. Cameron reiterated that Mackenzie will be in the NICU for "quite a long time". He hopes that Mackenzie reads the book (so to speak) on laryngomalacia and is able to mature out of it. I discussed the possibility of surgery again, and he feels that it's not necessary just yet. They're going to give her time and as much support as necessary before considering that route.
On top of the laryngomalacia, the doctors and nurse practitioners have noticed that Mackenzie has moderate chronic lung disease (aka: BPD or bronchopulmonary dysplasia). They increaesd her lasix to twice a day to help keep the fluids out of her lungs. Even though most babies are off oxygen support by their due date, there are times when babies continue to have a need for it. Mackenzie will be 39 weeks gestation tomorrow.
So that's pretty much where we stand right now. We'll continue to keep everyone updated as things progress.
Friday, December 5, 2008
Lots of Changes
Many changes have happened in the world 'o Mac, and I apologize for not updating sooner.
A couple nights ago after a pump feeding, we noticed a huge increase in Mackenzie's work of breathing. Mac happened to have two nurses that night (one is in orientation) and when we pointed it out they called in the nurse practitioner. David (the NNP) had them increase her oxygen flow to the max (3 liters) but Mac was still working pretty hard. Her stridor was very audible as well.
Since then Mac has continued to be on 3 liters of oxygen (actually they bumped it down to 2.5 today). She's very worn out from having to work so hard to breathe - so much so that she's not nippling as well as she was. They had to reduce her feeds to nipple every other feeding, and even then Mackenzie doesn't take her full bottle. For instance, at her 3:30 feeding this afternoon Mac took 3 sucks from her bottle and was done.
Unfortunately, these problems are all arising from her laryngomalacia. There really isn't any treatment for it - it's just something she needs to grow out of. Mac's reflux is compounding the problems so the focus is centralizing on controling that. I suggested liquid prilosec because I've heard it works much better than reglan and zantac put together. I mentioned this to the NNP last night, who in turn brought it up during rounds this morning. The neonatologists agree that it's worth a shot and Mac starts liquid prilosec tonight. Hopefully this will help quite a bit with her reflux, which will in turn help her laryngomalacia.
As I mentioned before, laryngomalacia means Mackenzie will be in the hospital longer than we expected. Her nurse today agrees that February is a reasonable guess on when Mac might be ready to come home. Andy and I are completely okay with that. We've been through 3 months of the NICU and we're prepared to go through another 2. I'm not saying it will be easy but it's about what is best for Mac.
Well, Mac wasn't allowed a tree for Christmas. It's some type of hazard - I'm thinking fire. Anyway, since Mac wasn't allowed a tree we got her a cute stocking instead. Andy picked it out and I must say he did a great job. :o) Another nurse told us to go ahead and bring in her swing, so we did. Mac hasn't felt well enough to get in it just yet, but I promise to take (and post) pics as soon as she is. The nurses have also suggested we get a fisher price aquarium thingy for the side of her crib so we'll probably be getting her one... although I'm thinking of waiting for it to be her x-mas present.
Speaking of x-mas, since Mac won't be home we've decided to bring it to her! I went out and bought her a couple things that she can actually have in the nicu. So far I bought her 2 pacis, a paci holder, a sleeper, a Calvin Klein blanket, and Burts Bees baby wash (which smells great!) We're actually going to wrap them up and the whole nine. Mackenzie can't have any toys in the NICU so I've ran out of ideas on what else to get her.
Oh, Mackenzie should now be getting personal nurses. By Monday, hopefully there will only be a handful of nurses who will take care of Mackenzie. With her laryngomalacia it's difficult for new nurses to understand what is "good" and what is "bad". I think this will make a huge difference in her care and be great.
A couple nights ago after a pump feeding, we noticed a huge increase in Mackenzie's work of breathing. Mac happened to have two nurses that night (one is in orientation) and when we pointed it out they called in the nurse practitioner. David (the NNP) had them increase her oxygen flow to the max (3 liters) but Mac was still working pretty hard. Her stridor was very audible as well.
Since then Mac has continued to be on 3 liters of oxygen (actually they bumped it down to 2.5 today). She's very worn out from having to work so hard to breathe - so much so that she's not nippling as well as she was. They had to reduce her feeds to nipple every other feeding, and even then Mackenzie doesn't take her full bottle. For instance, at her 3:30 feeding this afternoon Mac took 3 sucks from her bottle and was done.
Unfortunately, these problems are all arising from her laryngomalacia. There really isn't any treatment for it - it's just something she needs to grow out of. Mac's reflux is compounding the problems so the focus is centralizing on controling that. I suggested liquid prilosec because I've heard it works much better than reglan and zantac put together. I mentioned this to the NNP last night, who in turn brought it up during rounds this morning. The neonatologists agree that it's worth a shot and Mac starts liquid prilosec tonight. Hopefully this will help quite a bit with her reflux, which will in turn help her laryngomalacia.
As I mentioned before, laryngomalacia means Mackenzie will be in the hospital longer than we expected. Her nurse today agrees that February is a reasonable guess on when Mac might be ready to come home. Andy and I are completely okay with that. We've been through 3 months of the NICU and we're prepared to go through another 2. I'm not saying it will be easy but it's about what is best for Mac.
Well, Mac wasn't allowed a tree for Christmas. It's some type of hazard - I'm thinking fire. Anyway, since Mac wasn't allowed a tree we got her a cute stocking instead. Andy picked it out and I must say he did a great job. :o) Another nurse told us to go ahead and bring in her swing, so we did. Mac hasn't felt well enough to get in it just yet, but I promise to take (and post) pics as soon as she is. The nurses have also suggested we get a fisher price aquarium thingy for the side of her crib so we'll probably be getting her one... although I'm thinking of waiting for it to be her x-mas present.
Speaking of x-mas, since Mac won't be home we've decided to bring it to her! I went out and bought her a couple things that she can actually have in the nicu. So far I bought her 2 pacis, a paci holder, a sleeper, a Calvin Klein blanket, and Burts Bees baby wash (which smells great!) We're actually going to wrap them up and the whole nine. Mackenzie can't have any toys in the NICU so I've ran out of ideas on what else to get her.
Oh, Mackenzie should now be getting personal nurses. By Monday, hopefully there will only be a handful of nurses who will take care of Mackenzie. With her laryngomalacia it's difficult for new nurses to understand what is "good" and what is "bad". I think this will make a huge difference in her care and be great.
Monday, December 1, 2008
Breathing Woes
Between Mac's lung disease and her laryngomalacia, Mackenzie's having a bit of trouble breathing. The nurses had to increase her flow to 1 liter. It didn't help that yesterday Mac had a bronchospasm (where her lungs seemed to clamp down) because of her BPD. It took her quite a bit to recover from it. She had a few nasty spells back to back, but eventually stabilized. The last time she had a bronchospasm they had to intubate her. I don't see that happening anytime soon, although I don't want to jinx Mac either.
The nurses and docs are still trying to find the best ways to help Mackenzie breathe with the laryngomalacia. I think I posted in the previous blog that they tried putting her in a bouncy seat and even putting a wedge under her bed. It's difficult because what works one time may or may not work the next time - so we're constantly searching for something. Mac's nurse yesterday had the NNP order a chest x-ray and a CBC to make sure Mac wasn't getting sick. The CBC was completely unshifted (no infection) and the only thing they saw on the x-ray was her lung disease so that's good news.
Since we'll be spending Mackenzie's first Christmas in the NICU, I'm going out today in search of the perfect Christmas stocking to hang on her crib. I'm also hoping to get permission to put up a small Christmas tree next to Mac's bedside. So far it looks like I can, but I want to make sure before we go buy one. I think the only stipulations is that it can't have lights and it can't be a real plant. The patient care manager will be in tomorrow (she's at a meeting today) and I'll be able to find out for certain if Mackenzie can have one. In the meantime I think I'll buy one while I'm out today and just return it if the PCM says no.
The nurses and docs are still trying to find the best ways to help Mackenzie breathe with the laryngomalacia. I think I posted in the previous blog that they tried putting her in a bouncy seat and even putting a wedge under her bed. It's difficult because what works one time may or may not work the next time - so we're constantly searching for something. Mac's nurse yesterday had the NNP order a chest x-ray and a CBC to make sure Mac wasn't getting sick. The CBC was completely unshifted (no infection) and the only thing they saw on the x-ray was her lung disease so that's good news.
Since we'll be spending Mackenzie's first Christmas in the NICU, I'm going out today in search of the perfect Christmas stocking to hang on her crib. I'm also hoping to get permission to put up a small Christmas tree next to Mac's bedside. So far it looks like I can, but I want to make sure before we go buy one. I think the only stipulations is that it can't have lights and it can't be a real plant. The patient care manager will be in tomorrow (she's at a meeting today) and I'll be able to find out for certain if Mackenzie can have one. In the meantime I think I'll buy one while I'm out today and just return it if the PCM says no.
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