Ok... so, the Good: Little Lady (finally) passed her hearing test yesterday! WhaaaaHooooo! One less appointment I'll have to keep in my calendar, and one less worry to deal with! (I may have failed to mention that she failed her newborn hearing screening. And then when we went back again, for the re-test... she only passed on one side).
The other good, is that her physical therapist believes that she is making progress with her torticollis... improvement with holding her head in line with the center of her chest while lying, and further stretch on chin to shoulder stretch. Just gotta keep stretching her, and also incorporate some massage into it. PT again in a few weeks, and a back to back session... because she has so many different things to work on. *sigh*
The bad: Her 2nd opinion appt. with the Pediatric Orthopedic for tomorrow has been rescheduled for next week. I was really looking forward to meeting with a Dr about her knees and potential diagnosis of Arthrogryposis this week. I guess it'll just have to wait...
Thursday, September 30, 2010
Monday, September 27, 2010
Things winding down... (or are they?) Recap on Dr Appt's
Well, Little Lady and I survived our trip to the hospital. I will honestly say, that those were the WORST three days of my life. Ever.
Once we had returned home, we spent time with our family trying to adjust. Adjust to all of the issues Little Lady has to endure, and adjust to having a newborn in the house, and adjust to a new house. It was quite and "adjustment period".
After the hospital stay, we tried to get life back to normal as much as possible. But, of course, Little Lady had lots and lots of follow up visits and other Dr appts. Here is a quick re-cap of them all, to get us up to date on Little Lady (and her progress) :
7/28/10: Visit with pediatrician. Well baby appointment/post hospital follow up. Weight: 6lb 12oz. Uneventful.
8/09/10: Visit with Neonatologist (for her GERD). We reviewed her progress on the Zantac (it wasn't working that well). Changed her RX to Prilosec in the compounded form. Weight: 7lb 4oz (FINALLY back to birth weight!!)
8/09/10: Visit with Pediatric Orthopedic for knees. Dr checked range of motion (ROM) in her knees. Noticeable improvement since birth. Still a "possible diagnosis" of Arthrogryposis, but in charts, it's "Lower Limb Anomaly". Dr wants Little Lady to remain in Pavlik Harness, as it's keeping her knees in a bent position. Also, we are to continue stretching knees many times a day.
8/09/10: Visit with Genetics, to check for other apparent signs of Arthrogryposis. Took a history of Family Tree. Ordered a Chromosome Analysis, to determine if she has a genetic form of Arthrogryposis (which is more rare). Geneticist also diagnosed Little Lady with (yet another affliction) Torticollis. Because of the Torticollis, we are referred to Occupational Therapy (basically, physical therapy) to try work on her neck. Poor Little Lady... it's always something :(
8/26/10: Visit with Audiology. Little Lady didn't pass her "newborn hearing screening" in the hospital, so we had to visit the Audiologist for another screening. At this visit, Little Lady passed her screening from the right ear. She failed from the left ear. There could be hearing loss, OR it could have been because Little Lady wasn't in a good enough sleep. The Dr tried to check for fluid in the ear, to rule out hearing loss, but by this point, Little Lady would not hold still, so the Dr couldn't get an accurate reading on fluid levels. The Dr gave us a referral to ENT (ear, nose, and throat) Dr. So Little Lady has to go visit the ENT, who will then look inside her ears for visible signs of damage and/or fluid. Immediately following that visit, Little Lady will have an appt. with Audiology, for another hearing screening. *sigh*
8/30/10: Visit with Orthopedics, for knees. This appointment made me upset, and also made me question the Dr who is treating Little Lady. This was our 3rd appointment with this Dr (in addition to our consult in the hospital after Little Lady was born). At this appointment I started noticing that this Dr has a lot of inconsistencies in what she is telling me re: Little Lady's prognosis, diagnosis, condition... etc. Also, at this appointment, the Dr informs me that Little Lady is being treated for Hip Dysplasia. WHAT?!?!?!?! This was the first news I've heard of this... in fact, at a prior visit, we had been told that there was no hip dysplasia.
On this day, I decided that I was not happy with the care the Dr. was providing Little Lady. Too many inconsistencies, and not aggressive enough treatment... Since I am the one who has to be Little Lady's advocate, I decide to take action. (The next day, I get a referral from our health insurance for a 2nd opinion with another Pediatric Orthopedic Specialist out in Los Angeles. I also started the paperwork to apply at Shriner's Children's Hospital.)
9/09/10: Occupational Therapy. Similar to Physical Therapy. At this appointment, we learned some stretches to help Little Lady's neck problem (torticollis) and also reaffirmed the need for stretching the knees. This is a fun office to go to as it's full of toys and climbing things and stuff. Looks like a Gymboree center or something :)
9/21/10: Ultrasound on Hips. Ultrasound shows no shallow hips, indicating no hip dysplasia.
9/21/10: Orthopedics, Dr agrees that results of ultrasound do not show hip dysplasia (I've been here before, haven't I?) Dr states that she does not want to start serial casting on Little Lady's knees until she gets older. So, in the meantime, Little Lady is to remain in the Pavlik 'part time'. (I'm sure ready for our 2nd opinion appointment. It's coming up this Friday, on the 10/01/10. I am going to be pushing for more aggressive treatment of the knees. I want the casting done sooner, rather than later, as I believe that the younger she is, the better results we will see from the casting.)
OK, that gets us all up to date on Little Lady's journey. The rest of this blog will happen "in real time".
Once we had returned home, we spent time with our family trying to adjust. Adjust to all of the issues Little Lady has to endure, and adjust to having a newborn in the house, and adjust to a new house. It was quite and "adjustment period".
After the hospital stay, we tried to get life back to normal as much as possible. But, of course, Little Lady had lots and lots of follow up visits and other Dr appts. Here is a quick re-cap of them all, to get us up to date on Little Lady (and her progress) :
7/28/10: Visit with pediatrician. Well baby appointment/post hospital follow up. Weight: 6lb 12oz. Uneventful.
8/09/10: Visit with Neonatologist (for her GERD). We reviewed her progress on the Zantac (it wasn't working that well). Changed her RX to Prilosec in the compounded form. Weight: 7lb 4oz (FINALLY back to birth weight!!)
8/09/10: Visit with Pediatric Orthopedic for knees. Dr checked range of motion (ROM) in her knees. Noticeable improvement since birth. Still a "possible diagnosis" of Arthrogryposis, but in charts, it's "Lower Limb Anomaly". Dr wants Little Lady to remain in Pavlik Harness, as it's keeping her knees in a bent position. Also, we are to continue stretching knees many times a day.
8/09/10: Visit with Genetics, to check for other apparent signs of Arthrogryposis. Took a history of Family Tree. Ordered a Chromosome Analysis, to determine if she has a genetic form of Arthrogryposis (which is more rare). Geneticist also diagnosed Little Lady with (yet another affliction) Torticollis. Because of the Torticollis, we are referred to Occupational Therapy (basically, physical therapy) to try work on her neck. Poor Little Lady... it's always something :(
8/26/10: Visit with Audiology. Little Lady didn't pass her "newborn hearing screening" in the hospital, so we had to visit the Audiologist for another screening. At this visit, Little Lady passed her screening from the right ear. She failed from the left ear. There could be hearing loss, OR it could have been because Little Lady wasn't in a good enough sleep. The Dr tried to check for fluid in the ear, to rule out hearing loss, but by this point, Little Lady would not hold still, so the Dr couldn't get an accurate reading on fluid levels. The Dr gave us a referral to ENT (ear, nose, and throat) Dr. So Little Lady has to go visit the ENT, who will then look inside her ears for visible signs of damage and/or fluid. Immediately following that visit, Little Lady will have an appt. with Audiology, for another hearing screening. *sigh*
8/30/10: Visit with Orthopedics, for knees. This appointment made me upset, and also made me question the Dr who is treating Little Lady. This was our 3rd appointment with this Dr (in addition to our consult in the hospital after Little Lady was born). At this appointment I started noticing that this Dr has a lot of inconsistencies in what she is telling me re: Little Lady's prognosis, diagnosis, condition... etc. Also, at this appointment, the Dr informs me that Little Lady is being treated for Hip Dysplasia. WHAT?!?!?!?! This was the first news I've heard of this... in fact, at a prior visit, we had been told that there was no hip dysplasia.
On this day, I decided that I was not happy with the care the Dr. was providing Little Lady. Too many inconsistencies, and not aggressive enough treatment... Since I am the one who has to be Little Lady's advocate, I decide to take action. (The next day, I get a referral from our health insurance for a 2nd opinion with another Pediatric Orthopedic Specialist out in Los Angeles. I also started the paperwork to apply at Shriner's Children's Hospital.)
9/09/10: Occupational Therapy. Similar to Physical Therapy. At this appointment, we learned some stretches to help Little Lady's neck problem (torticollis) and also reaffirmed the need for stretching the knees. This is a fun office to go to as it's full of toys and climbing things and stuff. Looks like a Gymboree center or something :)
9/21/10: Ultrasound on Hips. Ultrasound shows no shallow hips, indicating no hip dysplasia.
9/21/10: Orthopedics, Dr agrees that results of ultrasound do not show hip dysplasia (I've been here before, haven't I?) Dr states that she does not want to start serial casting on Little Lady's knees until she gets older. So, in the meantime, Little Lady is to remain in the Pavlik 'part time'. (I'm sure ready for our 2nd opinion appointment. It's coming up this Friday, on the 10/01/10. I am going to be pushing for more aggressive treatment of the knees. I want the casting done sooner, rather than later, as I believe that the younger she is, the better results we will see from the casting.)
OK, that gets us all up to date on Little Lady's journey. The rest of this blog will happen "in real time".
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| Little Lady in her Pavlik Harness. Mommy likes to keep it covered up with dresses. |
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| My cousin gave me the great idea to dye the harness pink. Gotta accessorize somehow! |
Thursday, September 23, 2010
The Hospital Stay
So there we are, Little Lady and I... Daddy has gone home to be with our Little Men. My Mom (Thank God!) came down and brought be an overnight bag with comfy clothes, jammies, hygiene products, juice and magazines to get me through the night. She stayed a while, which I was glad for. She stayed while they drew blood from Little Lady (That was a challenge. The phlebotomist couldn't even do it on her tiny little veins, so an actual Dr ended up doing it.).
Little Lady was hooked up to a lot of equipment. She had tubes going into her nose, monitors strapped to her chest, big pager looking things hooked to her. She had an IV in, that looked simply awful, because on baby's so tiny they put a whole splint thing on and everything to keep the baby from accidentally pulling it out.
Our hospital contracted a specialist to come run tests on her.
She was also attached to a sleep monitoring machine.
She had one monitor hooked to her that was a PH reader. It read the levels of acid in her stomach. There were buttons on this monitor (it was bigger than a cell phone, smaller than an e-book) that I had to push. When she was laying down, I pushed the button. When she was upright, being held, I pushed that button. I pushed a button at the start of a feeding, and at the end of a feeding.
The main focus of this night was to do a sleep study to test her for sleep apnea and to do a "PH probe" to check her PH Levels, and levels of acid.
After going on a 4 hour fast (that was a looooong time for Little Lady) she was given a bottle (yep, a bottle. Not good for a 9 day old nursing baby.) of apple juice. They needed that as a base to do the PH Study. After she finished the apple juice I was allowed to hold her, change her, feed her normally. I just had to make sure I pushed the buttons whenever we changed activities or positions.
It was a VERY long night for me. It was so hard to see my precious new baby, who already had so much stacked against her, lying in this hospital bed with so many machines attached to her and tubes going into her. I do not have a picture to share of this hospital stay, because quite frankly, I didn't want one.
The next morning, Dr's made rounds. They came in... basically just checked on Little Lady, and said there was a possibility of discharge late that afternoon or early evening, once the specialist had gotten the results of his Sleep Study and PH Probe. Later that morning, the specialist came back, and took most of the tubes and machines off of Little Lady (yay!). He took his equipment and left, leaving me with expectations of him having the results all ready by that evening. Little Lady was looking much better now! All she had on her were the heart and oxygen monitors and the IV. I was hopeful that we would go home.
I washed myself with a soapy towel in the restroom, had some coffee and a little bit of food. And sat in that hospital room All. Day. Long. In the afternoon, Little Lady had an Upper GI done. She had (yet another) bottle. It was full of barium, which is a milky type liquid that they use to see it going down in the x-rays.
Daddy came to visit us again that afternoon. That helped my state of mind. I actually left the room for a little while and we went to the cafeteria together and grabbed a bite to eat.
A little while later, a Dr. came in to tell us that the results from the PH Probe and Sleep Study were in. The results showed that yes, Little Lady does have GERD. Also, she did have one brief episode of apnea during the sleep study. While we weren't glad that she has GERD, we were happy to have an answer to what caused the scary episode that sent us to the hospital in the first place. The pain from the GERD caused her to react that way, some babies have that reaction during an episode and also the not-breathing part was most likely her instinctively holding back vomit. So now we had to discuss treatment options.
Daddy was just as disappointed as I was to learn that Little Lady and I would not be going home that day.
The course of treatment for Little Lady, to begin with, would be a dose of Zantac. You have probably heard of it. So, a nurse comes in and administered a dose of the Zantac for her. It was flavored with peppermint. She gets a very tiny amount, .4ml. The reason why we couldn't go home, is that they wanted to make sure she didn't have a bad reaction to the medication for some reason. So we were to stay there for at least 12 hours after her first dose. So Little Lady and I settle in for another long night.
I laid there on the cot next to her crib... pretending to watch TV or flip through a magazine. Or Facebooking from my phone and texting. Just trying to kill time. Eventually I found some sleep, but never for long, and I woke often to nurse Little Lady. About 11pm, I finally got Little Lady into what seemed like a sound sleep. I was about to drift off myself when... Roommates. We got roommates. Yeah, and they were LOUD too. The case was a 2 year old little boy... with two of the worst things that can happen to a child... he had choked on a hot dog (that hadn't been cut up) and then while he was choking, fell into the spa and drowned. I was annoyed with these people 1)for being so noisy and waking up Little Lady and me. And 2) for not watching their child and having to be there in the first place. It was well past visiting hours, but since they were newly admitted, they felt the need to bring a whole parade of people through there. Lovely. Not much sleep that night...
The next morning, I was a mess. I called my husband and just broke down crying. I missed him, I missed my Little Men, and I wanted to go home (my new home, that I hadn't even spent a night in yet). I was crying when the nurse came in, and I was crying when the Dr's made rounds. To make matters worse... I couldn't get Little Lady to latch on and nurse, and it had been about 8 hours since her last feeding. The nurse says that if she wont latch on and eat, then she has to have a bottle. After about 40 minutes of trying... Little Lady finally latched on, but it was a weak latch. She only nursed for about 20 minutes. Right as we were finishing up with nursing, a lactation consultant comes in. She weighed Little Lady, and it turned out that she had lost almost a full pound since birth. Some weight loss in a newborn is normal, but apparently, this amount was cause for concern. The LC showed me all kinds of different ways to get Little Lady to keep breastfeeding. Most of these alternatives would have taken me the better part of 17 hours a day devoted to feeding her. MAYBE if she were my first and only child, I could pull it off. But it just wasn't realistic... I have a husband and two other children to take care of. Not to mention that I would need to supplement with formula to help Little Lady gain weight. So... I made the decision to pump breast milk,and give her alternate feedings of breast milk and formula, and only from bottles. That was a very hard decision for me to make, because I really did enjoy nursing my babies. But I just couldn't do it...
That morning, I really couldn't stop crying. All I wanted was to go home and be with my family. And nobody could tell me when we would be able to go. Little Lady had already reached the 12 hour mark from her medication, and gotten her 2nd dose. Still, nobody could tell me when we would get discharged.
Finally, about 3pm, some Dr's came in and told me that she was cleared by the Pediatric Gastrointologist for discharge. So they started the discharge paperwork and I told my husband that he could head down to the hospital. My mom went to watch the boys while my husband came to get us. The Ped GI doctor came in to let me know there was a prescription for the Zantac down at the pharmacy. We were to give it to Little Lady every 12 hours. Keep her elevated at all times, because laying flat would most likely aggravate the reflux... He scheduled us a follow up visit a little over a week later, as it takes a week for the Zantac to take full effect. He also told us, that he was surprised by how high the test showed her PH Level to be (amount of acid) based on me telling him that she never spit up. (She still never does. She's only ever spit up one time now, and she's 2 months old. She will however, on occasion, projectile vomit. Icky.)
My husband arrived at the hospital to get us. And we waited, and waited, and waited. The nurse came in and removed her from the monitors and her IV. We waited some more. My husband went and picked up her prescription at the pharmacy and we waited some more. FINALLY about 5:30pm, on July 26th, we were discharged.
I cried again on the way home. I had never felt so many emotions in such a short period of time. I was physically, mentally, and emotionally exhausted.
I got home and hugged my Little Men tighter than I've ever hugged them.
When we got home we ordered take out pizza, salad, and lasagna from a local pizzeria.
I slept so good that night.
Little Lady was hooked up to a lot of equipment. She had tubes going into her nose, monitors strapped to her chest, big pager looking things hooked to her. She had an IV in, that looked simply awful, because on baby's so tiny they put a whole splint thing on and everything to keep the baby from accidentally pulling it out.
Our hospital contracted a specialist to come run tests on her.
She was also attached to a sleep monitoring machine.
She had one monitor hooked to her that was a PH reader. It read the levels of acid in her stomach. There were buttons on this monitor (it was bigger than a cell phone, smaller than an e-book) that I had to push. When she was laying down, I pushed the button. When she was upright, being held, I pushed that button. I pushed a button at the start of a feeding, and at the end of a feeding.
The main focus of this night was to do a sleep study to test her for sleep apnea and to do a "PH probe" to check her PH Levels, and levels of acid.
After going on a 4 hour fast (that was a looooong time for Little Lady) she was given a bottle (yep, a bottle. Not good for a 9 day old nursing baby.) of apple juice. They needed that as a base to do the PH Study. After she finished the apple juice I was allowed to hold her, change her, feed her normally. I just had to make sure I pushed the buttons whenever we changed activities or positions.
It was a VERY long night for me. It was so hard to see my precious new baby, who already had so much stacked against her, lying in this hospital bed with so many machines attached to her and tubes going into her. I do not have a picture to share of this hospital stay, because quite frankly, I didn't want one.
The next morning, Dr's made rounds. They came in... basically just checked on Little Lady, and said there was a possibility of discharge late that afternoon or early evening, once the specialist had gotten the results of his Sleep Study and PH Probe. Later that morning, the specialist came back, and took most of the tubes and machines off of Little Lady (yay!). He took his equipment and left, leaving me with expectations of him having the results all ready by that evening. Little Lady was looking much better now! All she had on her were the heart and oxygen monitors and the IV. I was hopeful that we would go home.
I washed myself with a soapy towel in the restroom, had some coffee and a little bit of food. And sat in that hospital room All. Day. Long. In the afternoon, Little Lady had an Upper GI done. She had (yet another) bottle. It was full of barium, which is a milky type liquid that they use to see it going down in the x-rays.
Daddy came to visit us again that afternoon. That helped my state of mind. I actually left the room for a little while and we went to the cafeteria together and grabbed a bite to eat.
A little while later, a Dr. came in to tell us that the results from the PH Probe and Sleep Study were in. The results showed that yes, Little Lady does have GERD. Also, she did have one brief episode of apnea during the sleep study. While we weren't glad that she has GERD, we were happy to have an answer to what caused the scary episode that sent us to the hospital in the first place. The pain from the GERD caused her to react that way, some babies have that reaction during an episode and also the not-breathing part was most likely her instinctively holding back vomit. So now we had to discuss treatment options.
Daddy was just as disappointed as I was to learn that Little Lady and I would not be going home that day.
The course of treatment for Little Lady, to begin with, would be a dose of Zantac. You have probably heard of it. So, a nurse comes in and administered a dose of the Zantac for her. It was flavored with peppermint. She gets a very tiny amount, .4ml. The reason why we couldn't go home, is that they wanted to make sure she didn't have a bad reaction to the medication for some reason. So we were to stay there for at least 12 hours after her first dose. So Little Lady and I settle in for another long night.
I laid there on the cot next to her crib... pretending to watch TV or flip through a magazine. Or Facebooking from my phone and texting. Just trying to kill time. Eventually I found some sleep, but never for long, and I woke often to nurse Little Lady. About 11pm, I finally got Little Lady into what seemed like a sound sleep. I was about to drift off myself when... Roommates. We got roommates. Yeah, and they were LOUD too. The case was a 2 year old little boy... with two of the worst things that can happen to a child... he had choked on a hot dog (that hadn't been cut up) and then while he was choking, fell into the spa and drowned. I was annoyed with these people 1)for being so noisy and waking up Little Lady and me. And 2) for not watching their child and having to be there in the first place. It was well past visiting hours, but since they were newly admitted, they felt the need to bring a whole parade of people through there. Lovely. Not much sleep that night...
The next morning, I was a mess. I called my husband and just broke down crying. I missed him, I missed my Little Men, and I wanted to go home (my new home, that I hadn't even spent a night in yet). I was crying when the nurse came in, and I was crying when the Dr's made rounds. To make matters worse... I couldn't get Little Lady to latch on and nurse, and it had been about 8 hours since her last feeding. The nurse says that if she wont latch on and eat, then she has to have a bottle. After about 40 minutes of trying... Little Lady finally latched on, but it was a weak latch. She only nursed for about 20 minutes. Right as we were finishing up with nursing, a lactation consultant comes in. She weighed Little Lady, and it turned out that she had lost almost a full pound since birth. Some weight loss in a newborn is normal, but apparently, this amount was cause for concern. The LC showed me all kinds of different ways to get Little Lady to keep breastfeeding. Most of these alternatives would have taken me the better part of 17 hours a day devoted to feeding her. MAYBE if she were my first and only child, I could pull it off. But it just wasn't realistic... I have a husband and two other children to take care of. Not to mention that I would need to supplement with formula to help Little Lady gain weight. So... I made the decision to pump breast milk,and give her alternate feedings of breast milk and formula, and only from bottles. That was a very hard decision for me to make, because I really did enjoy nursing my babies. But I just couldn't do it...
That morning, I really couldn't stop crying. All I wanted was to go home and be with my family. And nobody could tell me when we would be able to go. Little Lady had already reached the 12 hour mark from her medication, and gotten her 2nd dose. Still, nobody could tell me when we would get discharged.
Finally, about 3pm, some Dr's came in and told me that she was cleared by the Pediatric Gastrointologist for discharge. So they started the discharge paperwork and I told my husband that he could head down to the hospital. My mom went to watch the boys while my husband came to get us. The Ped GI doctor came in to let me know there was a prescription for the Zantac down at the pharmacy. We were to give it to Little Lady every 12 hours. Keep her elevated at all times, because laying flat would most likely aggravate the reflux... He scheduled us a follow up visit a little over a week later, as it takes a week for the Zantac to take full effect. He also told us, that he was surprised by how high the test showed her PH Level to be (amount of acid) based on me telling him that she never spit up. (She still never does. She's only ever spit up one time now, and she's 2 months old. She will however, on occasion, projectile vomit. Icky.)
My husband arrived at the hospital to get us. And we waited, and waited, and waited. The nurse came in and removed her from the monitors and her IV. We waited some more. My husband went and picked up her prescription at the pharmacy and we waited some more. FINALLY about 5:30pm, on July 26th, we were discharged.
I cried again on the way home. I had never felt so many emotions in such a short period of time. I was physically, mentally, and emotionally exhausted.
I got home and hugged my Little Men tighter than I've ever hugged them.
When we got home we ordered take out pizza, salad, and lasagna from a local pizzeria.
I slept so good that night.
Tuesday, September 21, 2010
July 24th, 2010~ Part One
We woke up on Saturday the 24th knowing it was going to be a BIG day for us. I had scheduled a photographer to come out and take Little Lady's newborn pictures AND we were moving to a new home. A bigger home for our big family of five!
So I helped with the packing and loading of boxes and trucks for a few hours that morning before heading over to the new house with Little Lady to meet the photographer.
We got over there and started taking some lovely pictures of the Little Lady. We went outside and took some under the trees and next to the white picket fence.
For a newborn photo shoot, it seemed to go well. Little Lady was a little restless, it seemed and a little fussy, but she didn't cry too much. We did have to break often so I could nurse Little Lady. She was very awake that morning, so it was a little challenging for the photographer to get some of the shots. Not to mention that Little Lady isn't quite so bendy and smushy like other newborns, so we had to work around that as well.
Right about noon, people (husband, In Law's, brother in law, sister, friend) start showing up with trucks and trailers full of our belongings ready to be moved into the new house. I told the photographer that we'd probably better wrap it up so that I could help.
Just as she was packing up her equipment to leave, I picked up Little Lady...and she just wasn't right. She was totally stiff, back was arched, she didn't seem to be breathing and she seemed like she was choking or something. I called for my husband and he didn't know what to do either. I'm not one to jump the gun on panicking or calling 911. In all my years as a mom of boys I'd NEVER been to the emergency room. But this was scary and didn't seem to be getting better. I did a pinkie sweep of her mouth to see if there was an obstruction. Nothing. I laid her down to change her diaper, hoping it would make her cry. Because that would help her breath. Nothing. By this point she is still stiff, gasping for breath, red from head to toe, eyes are glazed over and rolling back in her head and she is kind of foaming at the mouth. We call 911.
While waiting for the emergency crews to arrive, I keep her in a reclined position with her head back so her airways stay clear. I go outside into the breeze and sun hoping that will get her breathing.
Nearly 5 minutes had passed (felt like an eternity), and she was still struggling for breath. She seemed less stiff, and was no longer totally red and foaming at the mouth. But she still wasn't quite herself either. The fire dept. arrived and I handed her off to them. She still wouldn't cry but did seem to be breathing normally again.
After that the paramedics arrived. We decided to take her to Loma Linda University (even though that is not our normal hospital. The paramedics recommended it because they specialize in pediatrics). They said she had an ALTE (apparent life threatening episode). We got her car seat and buckled her into it and then they strapped the car seat to the gurney. She still didn't cry, which was not typical for her. I rode in the front of the ambulance. Daddy followed behind in our vehicle.
We arrived at Loma Linda and met up in the emergency room. She was totally stable by then, and sound asleep from the ride over. The nurses hook her up to a heart monitor and also one that gauges her oxygen intake. All seemed well. She is finally seen by a Dr who basically says he will call our normal hospital/insurance to see if she can get transferred over there for admission so that they can run tests there. We got to Loma Linda around noon. And left about 4pm. And honestly, I was not impressed with the facility.
Even though Little Lady was back to normal at that point, they still wanted to transfer her to our hospital via ambulance to ensure that she remained under medical supervision. So again, I rode in the ambulance (this time in the back) while Daddy followed behind.
Once we get there, we just go straight to our hospital room. As it turned out, we had been pre-admitted so we weren't bothering with the ER or anything, just checking right in. The Dr's wanted us to stay over night to run some tests and such.
So we get checked in. Shortly after that Little Lady gets her initial consult from a very nice Dr. He says based on the description of what happened he believes she had a severe reaction to an episode of acid reflux. (You know, heartburn...) Of course, he couldn't be sure until all of the tests were done but he felt certain that was the case. So Little Lady and I settled in and Daddy stayed for a while. But we had left all of our friends and family behind with all of our moving AND our two boys!!! (Thank God for helpful grandparents there to watch our Little Men!!) So Daddy went to go be with our boys, and relieve all of our helpers while Little Lady and I settled in for a looooong night.
To be continued...
So I helped with the packing and loading of boxes and trucks for a few hours that morning before heading over to the new house with Little Lady to meet the photographer.
We got over there and started taking some lovely pictures of the Little Lady. We went outside and took some under the trees and next to the white picket fence.
And we took some in the house in the beautiful tutu that my cousin made for Little Lady
For a newborn photo shoot, it seemed to go well. Little Lady was a little restless, it seemed and a little fussy, but she didn't cry too much. We did have to break often so I could nurse Little Lady. She was very awake that morning, so it was a little challenging for the photographer to get some of the shots. Not to mention that Little Lady isn't quite so bendy and smushy like other newborns, so we had to work around that as well.
Right about noon, people (husband, In Law's, brother in law, sister, friend) start showing up with trucks and trailers full of our belongings ready to be moved into the new house. I told the photographer that we'd probably better wrap it up so that I could help.
Just as she was packing up her equipment to leave, I picked up Little Lady...and she just wasn't right. She was totally stiff, back was arched, she didn't seem to be breathing and she seemed like she was choking or something. I called for my husband and he didn't know what to do either. I'm not one to jump the gun on panicking or calling 911. In all my years as a mom of boys I'd NEVER been to the emergency room. But this was scary and didn't seem to be getting better. I did a pinkie sweep of her mouth to see if there was an obstruction. Nothing. I laid her down to change her diaper, hoping it would make her cry. Because that would help her breath. Nothing. By this point she is still stiff, gasping for breath, red from head to toe, eyes are glazed over and rolling back in her head and she is kind of foaming at the mouth. We call 911.
While waiting for the emergency crews to arrive, I keep her in a reclined position with her head back so her airways stay clear. I go outside into the breeze and sun hoping that will get her breathing.
Nearly 5 minutes had passed (felt like an eternity), and she was still struggling for breath. She seemed less stiff, and was no longer totally red and foaming at the mouth. But she still wasn't quite herself either. The fire dept. arrived and I handed her off to them. She still wouldn't cry but did seem to be breathing normally again.
After that the paramedics arrived. We decided to take her to Loma Linda University (even though that is not our normal hospital. The paramedics recommended it because they specialize in pediatrics). They said she had an ALTE (apparent life threatening episode). We got her car seat and buckled her into it and then they strapped the car seat to the gurney. She still didn't cry, which was not typical for her. I rode in the front of the ambulance. Daddy followed behind in our vehicle.
We arrived at Loma Linda and met up in the emergency room. She was totally stable by then, and sound asleep from the ride over. The nurses hook her up to a heart monitor and also one that gauges her oxygen intake. All seemed well. She is finally seen by a Dr who basically says he will call our normal hospital/insurance to see if she can get transferred over there for admission so that they can run tests there. We got to Loma Linda around noon. And left about 4pm. And honestly, I was not impressed with the facility.
Even though Little Lady was back to normal at that point, they still wanted to transfer her to our hospital via ambulance to ensure that she remained under medical supervision. So again, I rode in the ambulance (this time in the back) while Daddy followed behind.
Once we get there, we just go straight to our hospital room. As it turned out, we had been pre-admitted so we weren't bothering with the ER or anything, just checking right in. The Dr's wanted us to stay over night to run some tests and such.
So we get checked in. Shortly after that Little Lady gets her initial consult from a very nice Dr. He says based on the description of what happened he believes she had a severe reaction to an episode of acid reflux. (You know, heartburn...) Of course, he couldn't be sure until all of the tests were done but he felt certain that was the case. So Little Lady and I settled in and Daddy stayed for a while. But we had left all of our friends and family behind with all of our moving AND our two boys!!! (Thank God for helpful grandparents there to watch our Little Men!!) So Daddy went to go be with our boys, and relieve all of our helpers while Little Lady and I settled in for a looooong night.
To be continued...
Monday, September 20, 2010
Coming up next...
The next bit of things is a big long story. So, stay tuned and be ready to read. I'll try to have it up in the next day or two. My hands are very full, and it's taking me a while to get this all up to date.
And so it begins...
Our medical facility officially becomes my 2nd home:
On July 22nd, Little Lady turned a week old. She also had the first (of MANY) Dr. appts. I took her in to radiology for an ultrasound on her hips. The ultrasound was ordered by the Pediatric Orthopedic Surgeon.
It was a pretty quick procedure, they poked and prodded at her and moved her all around trying to get the angles and measurements they needed. She pee'd on their towel.
It started with an Ultrasound Technician. She did some "ultrasounding" and then left to get the radiologist for the 2nd part of the appt. When he came in, he took a look at what she had done, and took over to do some more.
Then when he finished up he said that *maybe* her hips looked a little shallow but in his opinion, the measurements were NOT consistent with hip dysplasia. They gave me a sealed copy of the ultrasound report, and told me to give it to the Ortho tomorrow at Little Lady's appt.
THE NEXT DAY
On July 23rd (mama's birthday) we took Little Lady to the Ortho for her first appt since they met in the NICU. The Dr. declared that her knees were already showing some improvement as far as flexibility and range of motion, but she still gave us a 'potential diagnosis' of Arthrogryposis. IF this is what she has, it is a mild case. She also told us that her ultrasound results did not appear to be consistent with hip dysplasi (just reaffirmed what the radiologist told us the day before). Then Dr said that she knows for us (mom & dad) this is a big deal, because it is our baby. But in the big picture of Little Lady's life... it's not a big deal. (ha!) Although, it did manage to make us feel some sense of relief. So, at this appointment, she prescribed a Pavlik Harness. This brace is typically used for patients with hip dysplasia, but her theory was that it would help pull Little Lady's legs up into a 'froggy' position, and encourage the knees to bend.
So, at 8 days old, she went home in this, and were told to come back in about 3 weeks.
On July 22nd, Little Lady turned a week old. She also had the first (of MANY) Dr. appts. I took her in to radiology for an ultrasound on her hips. The ultrasound was ordered by the Pediatric Orthopedic Surgeon.
It was a pretty quick procedure, they poked and prodded at her and moved her all around trying to get the angles and measurements they needed. She pee'd on their towel.
It started with an Ultrasound Technician. She did some "ultrasounding" and then left to get the radiologist for the 2nd part of the appt. When he came in, he took a look at what she had done, and took over to do some more.
Then when he finished up he said that *maybe* her hips looked a little shallow but in his opinion, the measurements were NOT consistent with hip dysplasia. They gave me a sealed copy of the ultrasound report, and told me to give it to the Ortho tomorrow at Little Lady's appt.
THE NEXT DAY
On July 23rd (mama's birthday) we took Little Lady to the Ortho for her first appt since they met in the NICU. The Dr. declared that her knees were already showing some improvement as far as flexibility and range of motion, but she still gave us a 'potential diagnosis' of Arthrogryposis. IF this is what she has, it is a mild case. She also told us that her ultrasound results did not appear to be consistent with hip dysplasi (just reaffirmed what the radiologist told us the day before). Then Dr said that she knows for us (mom & dad) this is a big deal, because it is our baby. But in the big picture of Little Lady's life... it's not a big deal. (ha!) Although, it did manage to make us feel some sense of relief. So, at this appointment, she prescribed a Pavlik Harness. This brace is typically used for patients with hip dysplasia, but her theory was that it would help pull Little Lady's legs up into a 'froggy' position, and encourage the knees to bend.
So, at 8 days old, she went home in this, and were told to come back in about 3 weeks.
After the beginning... Reality
She was born on July 15th, 2010 at 5:05 am. She made quite an entrance too... after not wanting to move down the birth canal, making Mama push on her sides and everything else. Then, she came out "Sunnyside Up". Typically, a baby is born facing the floor, face down. Little Lady wanted everyone to see her pretty face, so she came out facing the ceiling. That's probably part of the reason why she was not moving down as fast as expected... she was facing the wrong way!
But... not only was she "sunnyside up", she was also... kind of folded in half. Her legs were flipped up, and her feet were basically up next to her ears. I know, weird.
They did not plop this baby right down on my chest like you see on TV (or maybe even have had happen to you). In fact, out of all 3 of my children, only one of them was laid directly on my chest. The other two are troublemakers.
They took her to the other side of the room, to the bassinet, to get her cleaned up. I send The Hubs over to take photos while I'm laying there, helpless and numb, getting stitched up and cleaned. (This is when I posted a status update to Facebook and sent out the "She's Here" text messages, LOL!)
Little Lady scored 8's and 9's on all of her Apgars, so that was good news... but, about this "folded in half" thing. They couldn't really get her stretched out. Couldn't even measure her length. At this point, they are waiting for a pediatrician to come check her out. And I have still not held my baby. Pediatrician comes.
Once everyone is all clean, and baby is weighed things are a little calmer. Less people in the room and less chaos. This is when they tell me that something seems to be wrong with her legs, or knees, or hips... or all of them? They have decided to place her in the NICU. These are nightmare words for a new mom... NICU...
But, before they took her, they did give me and The Hubs an hour. I nursed her, and we did some 'skin to skin bonding' and, even though I didn't want to share, I let The Hubs have a turn.
But... not only was she "sunnyside up", she was also... kind of folded in half. Her legs were flipped up, and her feet were basically up next to her ears. I know, weird.
They did not plop this baby right down on my chest like you see on TV (or maybe even have had happen to you). In fact, out of all 3 of my children, only one of them was laid directly on my chest. The other two are troublemakers.
They took her to the other side of the room, to the bassinet, to get her cleaned up. I send The Hubs over to take photos while I'm laying there, helpless and numb, getting stitched up and cleaned. (This is when I posted a status update to Facebook and sent out the "She's Here" text messages, LOL!)
 |
| (you can see in these pics how her legs are straight in front of her, and not down) |
 |
| Hyperextended Knees. They are bending forward... |
Once everyone is all clean, and baby is weighed things are a little calmer. Less people in the room and less chaos. This is when they tell me that something seems to be wrong with her legs, or knees, or hips... or all of them? They have decided to place her in the NICU. These are nightmare words for a new mom... NICU...
But, before they took her, they did give me and The Hubs an hour. I nursed her, and we did some 'skin to skin bonding' and, even though I didn't want to share, I let The Hubs have a turn.
And then, off she went. Several Dr's came to look at her. They pretty much had no idea what was wrong with her. They sort of narrowed it down to it being her knees. Little Lady had knees that were hyperextended. They wouldn't bend, and so they stuck out right in front of her. She looked normal in the sitting position, but laying down, you could see that things weren't right. So, we were waiting until the next day, when the Pediatric Orthopedic Surgeon would come consult with her/us. So far, we had found out that they did Xrays, but that newborn/infant tissue is too soft to really see anything. Also, they did an ultrasound to make sure that her insides were all ok, and they were.
I left my hospital bed every 3 hours to go to the NICU and see her and nurse her.
 |
| (Here are her legs after 24 hours. Better than at birth, but still bad. One is obviously worse than the other.) |
On day two, towards the end of the day the Orthopedic FINALLY comes in. She checks things out, tries to move things, looks at the rest of Little Lady's body and shows us some 'stretches' we can do on her. She agrees to discharge us since there are no other health issues with Little Lady. And we schedule follow up appointments. She tells us that it could be a syndrome called Arthrogryposis. It basically means stiff joints. She isn't so sure though, because there are things that aren't consistent with Arthrogryposis. One of these things is that she has perfect folds on the joints of her fingers, and that, for the most part the problem seems to be isolated to the knees (she also has one crooked index finger), which would not be common for an Arthrogryposis patient.
So basically, we are left with no answers, and kind of on edge, but we are ready to go home!
She was only in the NICU for 36 hours. And my hospital/insurance was very accommodating as far as not kicking me out of my room until we knew she was going to get to come home with us. And THANK GOD she got to come home with us! I would have been a total mess if I'd have had to go home without my baby girl.
So that is part two of Little Lady's story. But there's still more...
 |
| Peace out NICU, I'm going home!!! |
Where to begin? At the beginning, I suppose...
I had a baby girl. And here is the story of it. (I am not only writing this for you to read... because you may really not care. But so that I can have the memory written out, while it is still fresh).
On Tuesday, July 13th I had an OB appt. I requested that he 'strip my membranes'. Because I was hoping it would put me into labor soon. He doesn't like doing it, but did anyways... but only 'gently'. LOL!
Well, it worked. From that afternoon, I started having random, sporadic contractions. No biggie really... I figured, Braxton Hicks. Tuesday night, my sister in law told me she would take my boys for a while the next day while she treated me with a gift certificate for some pampering... A mani/pedi (Awwww, I love her!).
Wednesday, I posted on Facebook that I was "hell bent on having this baby tonight or tomorrow". The contractions continued all morning... but not with regularity. I texted my husband that "these damn fake contractions are getting me annoyed, but not getting me to the hospital" he replied "maybe tonight". In the early afternoon, I brought by boys to the SIL's house. She told me to have the people doing my pedicure to rub all the pressure points that trigger labor contractions. I enjoyed my little pampering session... I went to pick up my boys, visited with SIL about an hour, then headed home.
I literally did not sit down after getting home. I figured that if I stayed on my feet, maybe gravity would do the work for me. I cleaned house mostly. The Hubs got home soon after that... about 4pm. I informed him that my "dumb contractions" were about 15 mins apart... so maybe I really was in labor, but that at 15 mins (and not all that strong) it could still be another day or more away. So I kept killing time... not sitting down. Soon, they were about 10 mins apart. So he started timing them for me. I cooked dinner.
He kept timing contractions, I went out in the yard to walk around, I talked for a few mins with my neighbor. By 7pm, they were 7 mins apart, and getting a little stronger. But I still wasn't all that uncomfortable. The Hubs was SURE we needed to go to the hospital. I told him it wasn't time. He was a nervous wreck... (to be fair, our first child came in only 5 hours. I was 9cm by the time we got to the hospital, so I understand why he was nervous. He didn't want to deliver our baby, LOL! And our hospital is about 40mins away.) So to put his mind at ease, at least a little, I told him I'd call Labor & Delivery. They didn't seem to think it was crucial for me to come yet. I told him that and he said the nurse was dumb. I held out.
Ok, so finally, by 8 or 8:30pm... the contractions were coming about 5mins apart, and strong enough that I decided to sit down, LOL! But I was just so scared that I was going to go into L&D with my 3rd child and they were going to tell me that it was false labor, haha!
By now... my poor husband was practically begging me to go to the hospital. Nope. I told him that it wasn't time yet, and I didn't want to be stuck in an uncomfortable hospital bed any longer than I had to be, thank you. He informed me that I'm stubborn and hard-headed.
By 9:30... I was feeling way uncomfortable, and having to breath through the contractions. They were still about 5 mins apart, but getting stronger. I told The Hubs "We'll go soon. But not yet".
At 10pm... I called my mom: "Can you come over and stay with the boys? We need to go to the hospital." The Hubs let out a huge sigh of relief.
FINALLY around 2:30am, I am 10cm. Let's do a push on the next contraction to see how it goes. So, I push. Nurse tells me that even though I'm 10cm, baby hasn't gotten low enough in the birth canal for pushing yet. Let's wait a while.
About 3:30am, I tell the nurse that I need to have the baby before sunrise. She agrees that it's time to try pushing again. And so we push through about 3 contractions. Hard work.
Baby is stubborn. She will not drop lower. She also appears to be a little 'sideways'. Probably the reason why she's not descending. So, here's the fun part. I have to push on my side. So, they help roll me (I can't roll myself, I'm numb!) onto my left side. And I push through 3 contractions. Then, they help roll me onto my right side, 3 more contractions. Back onto my back... baby seems to have straightened out. Push again. She's finally making her way down!!!!
At this point, the nurse 'calls for backup'. A few more nurses arrive. I keep pushing with each contraction. The OB finally arrives and the fun begins. So I huff, and I puff and I... oh wait... Ok,so I push and push. Little Lady is finally making an appearance, I'm crowning. So more pushing finally her head starts to emerge. They are saying that she doesn't have much hair. More pushing. Almost there! Keep going! Ok, her head will be out on the next push. WHAT?!?!? She's 'sunnyside up' (for those that don't know... babies come out 'face down'. Looking at the floor. She was looking at the ceiling). No wonder it didn't seem like she had much hair... that was her forehead!
A few more pushes to go... and SHE'S HERE!!!!
So, after about 2 hours of pushing, my bundle of joy arrives. She is 7lbs 2oz. Born at 5:05am on July 15th. What a relief! I cried happy tears.
On Tuesday, July 13th I had an OB appt. I requested that he 'strip my membranes'. Because I was hoping it would put me into labor soon. He doesn't like doing it, but did anyways... but only 'gently'. LOL!
Well, it worked. From that afternoon, I started having random, sporadic contractions. No biggie really... I figured, Braxton Hicks. Tuesday night, my sister in law told me she would take my boys for a while the next day while she treated me with a gift certificate for some pampering... A mani/pedi (Awwww, I love her!).
Wednesday, I posted on Facebook that I was "hell bent on having this baby tonight or tomorrow". The contractions continued all morning... but not with regularity. I texted my husband that "these damn fake contractions are getting me annoyed, but not getting me to the hospital" he replied "maybe tonight". In the early afternoon, I brought by boys to the SIL's house. She told me to have the people doing my pedicure to rub all the pressure points that trigger labor contractions. I enjoyed my little pampering session... I went to pick up my boys, visited with SIL about an hour, then headed home.
I literally did not sit down after getting home. I figured that if I stayed on my feet, maybe gravity would do the work for me. I cleaned house mostly. The Hubs got home soon after that... about 4pm. I informed him that my "dumb contractions" were about 15 mins apart... so maybe I really was in labor, but that at 15 mins (and not all that strong) it could still be another day or more away. So I kept killing time... not sitting down. Soon, they were about 10 mins apart. So he started timing them for me. I cooked dinner.
He kept timing contractions, I went out in the yard to walk around, I talked for a few mins with my neighbor. By 7pm, they were 7 mins apart, and getting a little stronger. But I still wasn't all that uncomfortable. The Hubs was SURE we needed to go to the hospital. I told him it wasn't time. He was a nervous wreck... (to be fair, our first child came in only 5 hours. I was 9cm by the time we got to the hospital, so I understand why he was nervous. He didn't want to deliver our baby, LOL! And our hospital is about 40mins away.) So to put his mind at ease, at least a little, I told him I'd call Labor & Delivery. They didn't seem to think it was crucial for me to come yet. I told him that and he said the nurse was dumb. I held out.
Ok, so finally, by 8 or 8:30pm... the contractions were coming about 5mins apart, and strong enough that I decided to sit down, LOL! But I was just so scared that I was going to go into L&D with my 3rd child and they were going to tell me that it was false labor, haha!
By now... my poor husband was practically begging me to go to the hospital. Nope. I told him that it wasn't time yet, and I didn't want to be stuck in an uncomfortable hospital bed any longer than I had to be, thank you. He informed me that I'm stubborn and hard-headed.
By 9:30... I was feeling way uncomfortable, and having to breath through the contractions. They were still about 5 mins apart, but getting stronger. I told The Hubs "We'll go soon. But not yet".
At 10pm... I called my mom: "Can you come over and stay with the boys? We need to go to the hospital." The Hubs let out a huge sigh of relief.
Mom gets up to the house, I kiss my boys goodbye and off we go. By now (10:20pm) the contractions are pretty bad. 3 mins apart. I cannot stand up at all during one anymore, and I'm REALLY breathing. We get to the hospital in record time. We get out of the truck, and start across the parking lot. I'm walking. Then a massive contraction hits and I double over in pain. Poor husband. He thinks I'm collapsing and goes to catch me. I breath through it, and he grabs me a wheelchair that got left in the lot.
It's nighttime, so we have to enter through the ER and go up to L&D. Once we get there, admissions finds my record, and tells L&D nurse over the phone that I appear to be 'active'. So the nurse comes out... See's the way I'm breathing and agrees. They did not waste time putting me into an exam room or labor room. They brought be straight to delivery. While they are putting all my info in the computer, a mid-wife does an internal exam. I am already between 4-5 cm dilated. Do I want pain control? Yes please! What? The anesthesiologist is doing a C-section, I have to wait. In the meantime they put something in my IV to 'take the edge off'.
An hour and a half and one Facebook status update later... I get my epidural. Oh. My. Gosh. THANK YOU GOD for epidurals!!!!!!
Epidural got put in kind of sideways though, so my left side got SUPER numb... right side, not so numb, LOL!
A little while later, another exam shows me to be 9cm. It's about 11:30pm. So, we wait. And The Hubs and I drift in and out of restless sleep.
(It's Thursday, July 15th now!) FINALLY around 2:30am, I am 10cm. Let's do a push on the next contraction to see how it goes. So, I push. Nurse tells me that even though I'm 10cm, baby hasn't gotten low enough in the birth canal for pushing yet. Let's wait a while.
About 3:30am, I tell the nurse that I need to have the baby before sunrise. She agrees that it's time to try pushing again. And so we push through about 3 contractions. Hard work.
Baby is stubborn. She will not drop lower. She also appears to be a little 'sideways'. Probably the reason why she's not descending. So, here's the fun part. I have to push on my side. So, they help roll me (I can't roll myself, I'm numb!) onto my left side. And I push through 3 contractions. Then, they help roll me onto my right side, 3 more contractions. Back onto my back... baby seems to have straightened out. Push again. She's finally making her way down!!!!
At this point, the nurse 'calls for backup'. A few more nurses arrive. I keep pushing with each contraction. The OB finally arrives and the fun begins. So I huff, and I puff and I... oh wait... Ok,so I push and push. Little Lady is finally making an appearance, I'm crowning. So more pushing finally her head starts to emerge. They are saying that she doesn't have much hair. More pushing. Almost there! Keep going! Ok, her head will be out on the next push. WHAT?!?!? She's 'sunnyside up' (for those that don't know... babies come out 'face down'. Looking at the floor. She was looking at the ceiling). No wonder it didn't seem like she had much hair... that was her forehead!
A few more pushes to go... and SHE'S HERE!!!!
So, after about 2 hours of pushing, my bundle of joy arrives. She is 7lbs 2oz. Born at 5:05am on July 15th. What a relief! I cried happy tears.
(There's more to tell... coming soon!!!)
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