Lexi got an OT and PT eval today. Hopefully they will be able to make some suggestions, such as exercises Lexi can get that will increase her energy level since she sleeps so much and can be somewhat lethargic. Dr. M said today, "feeding is obviously a concern" which surprised me because I thought she was doing pretty well. I think his concern is her lack of energy, difficulty staying awake for feedings. Although today she did pretty well (I think). Dr. M is referring her for Speech therapy tomorrow. Seems weird for a 3 week old to get speech therapy.
Dr. M is also a bit concerned about her jaundice. While I think the direct biliruben count improved when she started feeding, apparently the count has recently worsened. It wasn't surprising that is would worsen back when she wasn't getting breast milk, but is a bit strange that now that she's eating and is off the TPN (nutrition), that it would be a bit worse. The nurse took a urine sample from Lexi and tomorrow they will do an ultrasound of her liver to make sure everything is okay, and if it is, they will start her on a medication to help the jaundice.
'night...
Wednesday, April 29, 2009
Tuesday, April 28, 2009
3 weeks old
Yesterday there was nothing new going on. More of the same: 2 bottle feedings per day (she downed both bottles in seconds flat) and nursing twice a day. Still on 1L oxygen, still darn cute.
Today they've increased her feedings to 4 bottles per day, still 10mL per bottle. Still nursing twice a day. The continuous feeds are down to 16mL per hour since her by mouth feedings have been increased. She's on half the oxygen now. They discontinued her routine CBC's and BMP's (blood work). And the doctor ordered a PT and OT consult (haven't seen them yet). All good news to me--progress!
I've gone to the zoo for the last 2 days (enter your own joke here) with the boys for their preschool field trips. It was nice to spend some one on one time with each of them. Because of the field trips I haven't gotten to the hospital until late (4 p.m. or so) and haven't left before midnight. Now that the field trips are over I'll get back in my usual routine of dropping a kid off at preschool in the morning, coming to the hospital, and hopefully getting home around dinner. This also means more sleep--definitely necessary. My body is suffering and I'm scared to death of getting sick. Can't catch a cold and with this crazy Indiana weather, I've started chugging Airborne in the attempts to stay healthy. Jason is on day shift this week, so I'm not sure how he'll schedule his time at the hospital. Excited that my brother and sis-in-law are coming down this weekend to meet Lexi!
Today they've increased her feedings to 4 bottles per day, still 10mL per bottle. Still nursing twice a day. The continuous feeds are down to 16mL per hour since her by mouth feedings have been increased. She's on half the oxygen now. They discontinued her routine CBC's and BMP's (blood work). And the doctor ordered a PT and OT consult (haven't seen them yet). All good news to me--progress!
I've gone to the zoo for the last 2 days (enter your own joke here) with the boys for their preschool field trips. It was nice to spend some one on one time with each of them. Because of the field trips I haven't gotten to the hospital until late (4 p.m. or so) and haven't left before midnight. Now that the field trips are over I'll get back in my usual routine of dropping a kid off at preschool in the morning, coming to the hospital, and hopefully getting home around dinner. This also means more sleep--definitely necessary. My body is suffering and I'm scared to death of getting sick. Can't catch a cold and with this crazy Indiana weather, I've started chugging Airborne in the attempts to stay healthy. Jason is on day shift this week, so I'm not sure how he'll schedule his time at the hospital. Excited that my brother and sis-in-law are coming down this weekend to meet Lexi!
Monday, April 27, 2009
I'm too tired to come up with a clever title for this post...
We had our first step backwards, which luckily really isn't all that bad. Lexi is back on a nasal cannula (oxygen tubing under her nose). Her stats were dropping 2 nights ago, but she didn't seem in any discomfort or distress. We think she may just sleep so soundly, that she doesn't breathe the same. She's still on the oxygen now and we don't have any idea how long she'll be on it.
Alexis is getting the maximum amount of breast milk through her tube feeding. She nurses twice a day, continues to have no problems latching on, but great difficulty staying awake. Today she also got to start taking a bottle twice a day--only 10 mL (a third of an ounce). The first bottle she got she only took 3 mL and that was over the course of an hour. Then tonight we tried again and she chugged the whole thing in a matter of seconds. Lexi had lost a bit of weight over the past 2 days (to be expected d/t trying to feed her by mouth) but today her weight has increased again. She's now weighing 6 lbs, 4 oz.
Alexis also had her PICC line taken out today. Yeah!!! Another free extremity.
I tried talking to the doctor today about how long Alexis will be in the NICU. Again, no one wants to speculate, but the doctor said something like, "it may take a couple more weeks, it may take a month." Hard to hear. Tuesday she will have been there for 3 weeks. I'd love for her to be home in time for Dad's birthday when the whole family will be here (May 15) but don't want to get my hopes up.
Tomorrow and Tuesday I won't get to the hospital as early as usual. The boys have their preschool field trips to the zoo (Nicholas on Monday, Blake on Tuesday). It will be nice to have some one on one time with both of them. Hope my fat feet can hold up. I go back to the doctor a week from Friday. Hopefully she'll give me something for my swelling since the high blood pressure medication didn't do anything. It's sandal weather and my feet are bustin' out!!
Alexis is getting the maximum amount of breast milk through her tube feeding. She nurses twice a day, continues to have no problems latching on, but great difficulty staying awake. Today she also got to start taking a bottle twice a day--only 10 mL (a third of an ounce). The first bottle she got she only took 3 mL and that was over the course of an hour. Then tonight we tried again and she chugged the whole thing in a matter of seconds. Lexi had lost a bit of weight over the past 2 days (to be expected d/t trying to feed her by mouth) but today her weight has increased again. She's now weighing 6 lbs, 4 oz.
Alexis also had her PICC line taken out today. Yeah!!! Another free extremity.
I tried talking to the doctor today about how long Alexis will be in the NICU. Again, no one wants to speculate, but the doctor said something like, "it may take a couple more weeks, it may take a month." Hard to hear. Tuesday she will have been there for 3 weeks. I'd love for her to be home in time for Dad's birthday when the whole family will be here (May 15) but don't want to get my hopes up.
Tomorrow and Tuesday I won't get to the hospital as early as usual. The boys have their preschool field trips to the zoo (Nicholas on Monday, Blake on Tuesday). It will be nice to have some one on one time with both of them. Hope my fat feet can hold up. I go back to the doctor a week from Friday. Hopefully she'll give me something for my swelling since the high blood pressure medication didn't do anything. It's sandal weather and my feet are bustin' out!!
Saturday, April 25, 2009
Friday, April 24, 2009
Breast Milk--A Natural Sedative
It's our third Friday night in the NICU. Still no idea on how long Lexi will be here. We were originally told by a pediatric surgeon that he estimated a 3-4 week stay. Everything with Lexi has been better than textbook in her surgery and recovery so I'm a bit surprised that they didn't estimate a longer stay. I'm guessing we'll be here at least 3 weeks and Lexi is recovering quicker and faster than most do.
Lexi is now off her lipids and TPN which means the PICC line will be out tomorrow. She's still getting continuous feeding through an NG tube but she got to start nursing twice a day. She's a pro at latching on--she just has a hard time staying awake. I had the same problem with both boys.
She's now up to 6 lbs, 5 oz. What a chunk!
Lexi is now off her lipids and TPN which means the PICC line will be out tomorrow. She's still getting continuous feeding through an NG tube but she got to start nursing twice a day. She's a pro at latching on--she just has a hard time staying awake. I had the same problem with both boys.
She's now up to 6 lbs, 5 oz. What a chunk!
Wednesday, April 22, 2009
Little Sucker!
Yeah--I didn't get around to posting anything yesterday. I had a bit of a meltdown. Nothing specific happened (Lexi is fine), no one did anything wrong. I just kind of cracked. I was doing fine until late afternoon and I can't really explain what happened or what triggered it. Maybe a combination of 2 weeks in the NICU, balancing time as best I can between kids, hearing worst case scenarios from the doctors (no, she does NOT have leukemia) and balancing visitors while trying to fit in my own time to spend with Lexi and pump breast milk (ouch!) and talk to doctors and nurses, I just kind of lost it. Poor Jason thought he had done something wrong. Nope. Everyone handles stress differently. I put on the smile and really convince myself that everything's fine and then--crack. I'm better today--still tearing up a bit at times, but nothing like yesterday. It's not hard to tell if I'm cracking--tears, sniffing, and lots of breathing as I try to hold it together. And don't talk to me because I can't respond because I'm trying to breathe to keep from losing it. So if you ever see it happen, don't talk to me and give me space. It could get ugly.
Now, as for Lexi. She continues to do really well with her feedings. They continue to increase the amounts of breast milk she gets through the tube in her nose. She's up to 12 mL/hour today. They've discontinued her lipids (fats) and if she continues this way, she'll probably have her TPN (nutrition) discontinued by the weekend. I think the doctor said that when that is done, they can take out the PICC line in her foot since she won't be using it any more and it can be an infection risk. Her weight is up to 5 lbs 12 oz, the weight she was when she was born.
Yesterday the neonatologist and infection control doctor were concerned again about the white blood cell count, but after the blood test results they got today, they are no longer concerned and it's considered resolved.
The greatest accomplishment of the day: I was discussing the feeding plans with the neonatologist and he agreed that I could try to breast feed Lexi today. Let me clarify. I can't really breast feed because then they can't tell the amount she's taking in. So I could pump and then right after that I could breast feed since she wouldn't get much (if anything), but it's a way to see if she shows any interest in latching on. I've read many things about how babies with Downs can have some difficulty with this. For one, they have lower muscle tone and can have difficulty sucking. Also I believe that the roof of their mouth is not as arched and that it can also cause difficulty with latching on. So after pumping, I tried to have her latch on and....it was instant. She would only suck a couple of times (probably because she wasn't getting anything) and let go, but she latched on 5 times with no problems. What a sucker!!
Now, as for Lexi. She continues to do really well with her feedings. They continue to increase the amounts of breast milk she gets through the tube in her nose. She's up to 12 mL/hour today. They've discontinued her lipids (fats) and if she continues this way, she'll probably have her TPN (nutrition) discontinued by the weekend. I think the doctor said that when that is done, they can take out the PICC line in her foot since she won't be using it any more and it can be an infection risk. Her weight is up to 5 lbs 12 oz, the weight she was when she was born.
Yesterday the neonatologist and infection control doctor were concerned again about the white blood cell count, but after the blood test results they got today, they are no longer concerned and it's considered resolved.
The greatest accomplishment of the day: I was discussing the feeding plans with the neonatologist and he agreed that I could try to breast feed Lexi today. Let me clarify. I can't really breast feed because then they can't tell the amount she's taking in. So I could pump and then right after that I could breast feed since she wouldn't get much (if anything), but it's a way to see if she shows any interest in latching on. I've read many things about how babies with Downs can have some difficulty with this. For one, they have lower muscle tone and can have difficulty sucking. Also I believe that the roof of their mouth is not as arched and that it can also cause difficulty with latching on. So after pumping, I tried to have her latch on and....it was instant. She would only suck a couple of times (probably because she wasn't getting anything) and let go, but she latched on 5 times with no problems. What a sucker!!
Monday, April 20, 2009
"She's a star!"
We had another new neonatologist today--Dr. P. Really nice guy. He too is impressed by Lexi's progress. Her feedings were again increased while the TPN (nutrition) and lipids were decreased.
Dr. P said that Lexi's white blood cell count was up again and they don't know why. He will talk to the infectious disease doc for his input. One thing that Dr. P mentioned was that something they always have to consider, especially because is can be more prevalent with Downs, is leukemia. Hearing the word come out of a doctor's mouth when he's talking about your child, can really put your mind in a tailspin. But by no means do they think she has leukemia. Other counts that can be a sign of infection or trouble are okay. It's just something they have to consider. I won't be losing sleep over this, but now it'll always be in the back of my mind now. Because the increased white blood cell count can be a sign of infection, it's possible they will put Lexi on an antibiotic just as a precautionary measure, but they are glad to see that she looks good, seems comfortable. As Dr. P so nicely put it, "She's a star." Yes, she is.
Dr. P said that Lexi's white blood cell count was up again and they don't know why. He will talk to the infectious disease doc for his input. One thing that Dr. P mentioned was that something they always have to consider, especially because is can be more prevalent with Downs, is leukemia. Hearing the word come out of a doctor's mouth when he's talking about your child, can really put your mind in a tailspin. But by no means do they think she has leukemia. Other counts that can be a sign of infection or trouble are okay. It's just something they have to consider. I won't be losing sleep over this, but now it'll always be in the back of my mind now. Because the increased white blood cell count can be a sign of infection, it's possible they will put Lexi on an antibiotic just as a precautionary measure, but they are glad to see that she looks good, seems comfortable. As Dr. P so nicely put it, "She's a star." Yes, she is.
Saturday, April 18, 2009
Alexis Smith, meet Alexis Smith.
Alexis seems to be tolerating her feedings well. I walked in today and they had doubled the amount of breast milk she was getting to 4 mL per hour. And her white blood cell count has gone down. Apparently that's a good thing...
She's had her eyes open more today, which I love. I know you can't really determine eye color this early, but I swear I think they're gonna be blue. I hope. Just like Daddy. Both boys have brown eyes like me so we're due for a blue-eyed baby.
There are currently 4 Smiths on the NICU--2 of which have the first name of Alexis. Next time I get married my husband is taking MY last name. (This is a joke people. Kind of.)
She's had her eyes open more today, which I love. I know you can't really determine eye color this early, but I swear I think they're gonna be blue. I hope. Just like Daddy. Both boys have brown eyes like me so we're due for a blue-eyed baby.
There are currently 4 Smiths on the NICU--2 of which have the first name of Alexis. Next time I get married my husband is taking MY last name. (This is a joke people. Kind of.)
Friday, April 17, 2009
Tube-free!!! (for 3 whole minutes!)
Alexis says, "Ahhhh, the tube is out!!!"
I had a hard time this morning seeing the boys drive off with Mom to go to Elkhart for the weekend. I'm usually so glad to get a break, but the guilt of not spending enough time with them has set in. And as happy as they were to go, I can sense, especially with Nicholas, that they miss having as much time with me.
When I got to the hospital today, I was excited to see that Alexis no longer has the IV in her left hand. Yeah!!! Both hands are free!!! And then, moments later, the nurse came in to take out the repogle (the tube in her mouth that drains out her stomach). She had no tubes on her face for a whole 3 minutes! The nurse then placed a smaller tube in her mouth to start feedings of breast milk. Now we watch and hope that it stays down and is properly digested. Nothing has come back up yet and she has pooped since the feeding started. Good signs. I really think this kid is gonna defy all odds. And her weight is up to 5 lbs, 6 oz.
With the boys not being home, at least I am able to stay at the hospital later. I figure I stay up until all hours at night checking facebook and updating the blog and downloading pictures--might as well do it at the hospital instead of doing it at home (they don't allow cell phones on the NICU, but laptops are okay). I need to find something to decorate this drab and sterile room. And now we can put real clothes on her since she is IV free (still can't cover the legs and feet due to wires and the PICC line, but tops and onesies are okay). They found a cute little top in the supply room and put it on her, but it's a size 3 month and she absoltely swims in it. Gotta stop by Walmart for something to hang on the walls and for some newborn sized pink onesies. Ahh, finally, pink onesies...
Thursday, April 16, 2009
Suite Alexis
It will probably be a couple more days before they take the tube out of Lexi's mouth and start continuous feedings (which will instead require a new tube in her nose. Great.). Her CBC is still abnormal and an infectious disease doctor came and talked to me, agreeing with the neonatologist that since she's doing so well and has no sign of discomfort, they think it may be due to the T21.
When talking to the neonatologist, I asked her if she had any estimate on how long Alexis would be there, even though I understand that there are a lot of unknowns. Her reply: "it could be a while." Not to take away from the fact that she's doing so well, but because her duodenum was distended, they "anticipate some complications." The feedings may have to start and stop several times and it could take a while before she's eating and digesting regularly. And they've moved us to a long term room. We're no longer out in one of the cubicles--we have a private room. It's nice, but I don't like the fact that we're considered long-term. I'm choosing to refer to the room as a suite. Makes me feel very "Fancy Nancy".
It get's really frustrating some days, but don't feel sorry for us. The people across from us have 4 children, 3 of which were born at 29 weeks. Another family lives 2.5 hours away. Compared to EVERY other baby I've seen, Alexis at her 5 lbs 3 oz is about twice their size. I can now pick her up on my own almost any time I want, unlike the parents of the premies who can only reach their hand into a hole on the side of the incubator. And Alexis is beautiful and comfortable, and so very loved.
When talking to the neonatologist, I asked her if she had any estimate on how long Alexis would be there, even though I understand that there are a lot of unknowns. Her reply: "it could be a while." Not to take away from the fact that she's doing so well, but because her duodenum was distended, they "anticipate some complications." The feedings may have to start and stop several times and it could take a while before she's eating and digesting regularly. And they've moved us to a long term room. We're no longer out in one of the cubicles--we have a private room. It's nice, but I don't like the fact that we're considered long-term. I'm choosing to refer to the room as a suite. Makes me feel very "Fancy Nancy".
It get's really frustrating some days, but don't feel sorry for us. The people across from us have 4 children, 3 of which were born at 29 weeks. Another family lives 2.5 hours away. Compared to EVERY other baby I've seen, Alexis at her 5 lbs 3 oz is about twice their size. I can now pick her up on my own almost any time I want, unlike the parents of the premies who can only reach their hand into a hole on the side of the incubator. And Alexis is beautiful and comfortable, and so very loved.
Wednesday, April 15, 2009
Alexis, meet your brothers!
Alexis didn't get to start eating today like we'd hoped. The tube that had the suction turned off and was just using gravity to drain her stomach had to get turned back on. Not a big concern, but there was so much draining out, they turned in back on. Because that tube is still in, she can't start taking breast milk. The neonatologist did have her taken off the nasal canula, so no more tubing under her nose. The dr. is a bit concerned about the increasing jaundice and the abnormal CBC count and had some blood work ordered. She also ordered an ultrasound to check out the bump on her head. Her weight is down to 5 lbs, 3 oz. The nurse didn't seem too surprised by this simply because Lexi isn't eating yet.
Jason and I met with the intake person from First Steps today. She just got some basic information and explained the program. It's always funny to tell social workers that I work for CICOA because they all have the same reaction: "oh, well you probably already know about most of this stuff."
The ultrasound didn't clarify what the bump on her head was, but confirmed that her brain looks fine. The doctor had ordered a blood test which the nurse first attempted to collect by pricking her heel. Twice. When that didn't work, they attempted to collect the blood by inserting a needle in her vein. After 5 (yes, 5!) attempts by 4 different nurses, they finally got the vein and collected the blood. My poor baby...
The best part of the day was that Nicholas and Blake finally got to meet their sister. Mom and Paula and Blake picked Nick up from preschool, stopped and got McDonald's and brought it to the hospital to eat. After lunch, Lexi's nurse B helped them put on gowns, wash hands, and we all went back to see Lexi. The boys were so good. They enjoyed rubbing her head and trying to get her to hold their fingers. (She slept through the whole thing.) Nicholas had picked out a purple monster truck for her and tried to show her the present he got her. The boys were thrilled to see that Lexi had bought them presents too. Wow, what a sweet and thoughtful girl! Wonder when she found the time? The funniest thing of the day is when Blake noticed her belly button, which is quite big from the ambilical hernia and still has some dried blood on the end. Blake asked, "why does her penis look like that?"
I got really choked up today when I was finishing up changing Lexi's diaper and saw a family standing off to the side waiting to talk to me. It was an elderly couple and their adult son. The woman came over and handed me a pink blanket and a pink knit teddy bear and said, "we wanted to give this to you in memory of our granddaughter who died a year ago. Her name was Alexis."
Started my high blood pressure medicine today. Can't imagine why my b/p would be up...
Tuesday, April 14, 2009
1 week old
Alexis continues to do amazingly well. They were hoping to start hearing bowel sounds 10-14 days following the surgery and they were already hearing them yesterday. The tube that's in her mouth and drains all the ick from her stomach has been turned off. It's still in, but just running by gravity. If having this tube turned off doesn't cause her to vomit, they may remove the tube altogether tomorrow, and maybe even start feeding. Wow. WAY ahead of schedule. Her oxygen is at half the level today that it was yesterday and that too may be removed tomorrow. They also took her out of the bassinet with the heating lamp and put her in a real crib. Just like a real baby!
There's also a lot of stuff that I don't understand. Her direct bili count (which is different than her "regular" biliruben) is high. Her CBC is abnormal, but according to the neonatologist, "she just looks so good, it may just be due to the trisomy 21" and isn't worried.
Lexi has a large bump on her head and the neonatologists don't know why it's there. They aren't terribly concerned because there's no redness (which would be a sign of infection) but they may do an ultrasound to see if there's anything to be concerned about. I got to hold Lexi for a while this afternoon and when Mom came up to visit she got to hold Lexi for the first time.
I was so excited that my friend Julie came to see us today at the hospital. It was fun to run into several familiar faces in the cafeteria including my favorite nurse from maternal fetal medicine and the nurse from labor delivery. I said hi the the (male) resident OBGYN that delivered Lexi, but I didn't make eye contact. He knows me a little too, errr, intimately now. I also avoided contact with the lactation nazi. :)
There's also a lot of stuff that I don't understand. Her direct bili count (which is different than her "regular" biliruben) is high. Her CBC is abnormal, but according to the neonatologist, "she just looks so good, it may just be due to the trisomy 21" and isn't worried.
Lexi has a large bump on her head and the neonatologists don't know why it's there. They aren't terribly concerned because there's no redness (which would be a sign of infection) but they may do an ultrasound to see if there's anything to be concerned about. I got to hold Lexi for a while this afternoon and when Mom came up to visit she got to hold Lexi for the first time.
I was so excited that my friend Julie came to see us today at the hospital. It was fun to run into several familiar faces in the cafeteria including my favorite nurse from maternal fetal medicine and the nurse from labor delivery. I said hi the the (male) resident OBGYN that delivered Lexi, but I didn't make eye contact. He knows me a little too, errr, intimately now. I also avoided contact with the lactation nazi. :)
Monday, April 13, 2009
Vent-free!
When we arrived in the NICU this morning, Alexis was more alert than I'd seen her. Unfortunately, she was pretty easily agitated too. We were glad to see her oxygen concentration was way down from yesterday and the neonatologist said that there were still some areas of her lung that were collapsed. But they still planned on taking her off the vent today.
I was also surprised to hear she had several dirty diapers throughout the night and I probably changed 5 wet diapers today during the day. We had been told that they may not hear any bowel sounds for 10-14 days, but already today they have heard them. Great sign!
So after lunch, nurse and respiratory therapist took Lexi off the vent. And she's doing fabulous! She remained alert and seemed comfortable. The nurse gave her a bath and then Jason and I were both allowed to hold her for quite a while. A perfect day...
I was also surprised to hear she had several dirty diapers throughout the night and I probably changed 5 wet diapers today during the day. We had been told that they may not hear any bowel sounds for 10-14 days, but already today they have heard them. Great sign!
So after lunch, nurse and respiratory therapist took Lexi off the vent. And she's doing fabulous! She remained alert and seemed comfortable. The nurse gave her a bath and then Jason and I were both allowed to hold her for quite a while. A perfect day...
Sunday, April 12, 2009
Happy Easter!
After watching the boys find Easter eggs this morning, Jason and I headed to the hospital. First time in 36 years I haven't gone to church on Easter--so wrong!
When we walked in, we immediately noticed that Alexis's oxygen level was at 52. Much higher than I've ever seen it. According to the neonatologist, she has atelectasis (partial lung collapse). They had taken an x-ray to make sure the placement of the vent was okay (it was), increased her oxygen, and repositioned her. He still thought the vent should come out in the next 24 hours, but would like to see Lexi more alert and breathing more on her own before that happened. Her pain medicine had been decreased again today and according to her nurse B, she had been awake this morning before our arrival and seemed comfortable. Later that afternoon they took another x-ray and her lungs were definitely looking better but the neonatologist wants to wait until tomorrow to take her off the vent. Too soon and her lung could collapse. She may need to receive oxygen through a nasal canula once the vent is off, which would be okay, but if she's taken off the vent too soon, she may need a c-pap machine and that can cause additional problems. I'm so excited to see her off the vent, but scared to death at the same time.
Dr. M still thinks she looks a bit jaundiced and thinks it will probably get worse before it starts getting better. It's not bad enough to put her under a light and will probably improve when she starts eating real food, not that that will be any time soon.
We were probably at the hospital for about 6 hours before leaving and coming back to Paula's for Easter dinner. Happy Easter to all of you. It's the best Easter I've ever had!
When we walked in, we immediately noticed that Alexis's oxygen level was at 52. Much higher than I've ever seen it. According to the neonatologist, she has atelectasis (partial lung collapse). They had taken an x-ray to make sure the placement of the vent was okay (it was), increased her oxygen, and repositioned her. He still thought the vent should come out in the next 24 hours, but would like to see Lexi more alert and breathing more on her own before that happened. Her pain medicine had been decreased again today and according to her nurse B, she had been awake this morning before our arrival and seemed comfortable. Later that afternoon they took another x-ray and her lungs were definitely looking better but the neonatologist wants to wait until tomorrow to take her off the vent. Too soon and her lung could collapse. She may need to receive oxygen through a nasal canula once the vent is off, which would be okay, but if she's taken off the vent too soon, she may need a c-pap machine and that can cause additional problems. I'm so excited to see her off the vent, but scared to death at the same time.
Dr. M still thinks she looks a bit jaundiced and thinks it will probably get worse before it starts getting better. It's not bad enough to put her under a light and will probably improve when she starts eating real food, not that that will be any time soon.
We were probably at the hospital for about 6 hours before leaving and coming back to Paula's for Easter dinner. Happy Easter to all of you. It's the best Easter I've ever had!
Saturday, April 11, 2009
Lexi: Day 5
Today they started weaning Lexi from her pain meds, but she still slept the whole time we were at the hospital. The nurse told us that this morning her right lung sounded a bit diminished and so they did an x-ray to check the placement of the vent. The vent was fine, but the lung wasn't as inflated as it should be. So they increased her oxygen and repositioned her. This wasn't something causing them great concern and often fixes itself. I assumed that because of this all bets would be off regarding her coming off the vent tomorrow. Dr. M (neonatologist) said that sometimes this kind of thing can be caused by the vent and so there is still a possibility of coming off the vent. But there was still some question because she needs to be more alert first. He said that tomorrow, with the pain meds being decreased again, she may be more alert, more feisty or agitated. We'll just wait and see.
She is still appearing a bit jaundiced to the doctors, but still not enough to put her under the lamp. I remember when Blake was hospitalized for jaundice and I was just devastated. Now, I just think, "what's the big deal?" Amazing how your perspective changes...
She is still appearing a bit jaundiced to the doctors, but still not enough to put her under the lamp. I remember when Blake was hospitalized for jaundice and I was just devastated. Now, I just think, "what's the big deal?" Amazing how your perspective changes...
Friday, April 10, 2009
First full day of recovery
I had just started to notice that no one who works in the NICU overstates how well a patient is doing. They don't just drop words like "great" or "terrific". When they would tell me how Lexi was doing, they would uses words like "fine" and "okay". So you can imagine my delight when the neonatologist, Dr. M, walked up to me this morning and said, "She's doing really well--she's doing amazingly well". YEAH LEX!!! Such a proud mommy am I! Dr. M said that they would keep her on her pain med today and not change much of anything. Tomorrow they will start to ween her and see how she does and if everything continues to go well, they may remove the vent in 2 days. Hallelujah!
She looked really good today, really tired. She appeared a little less jaundiced than yesterday. I was thrilled when they let me hold her this afternoon for a while. She slept the whole time despite my attempts to wake her. Of course the minute they took her back to place in her bassinet and Jason went to change her diaper, she woke. She looked very groggy, but kept her eyes open for a while. Hopefully she'll be a bit more alert tomorrow, although there is some relief to seeing her so groggy as she doesn't appear to be in any sort of pain.
2 different chaplains stopped by to visit us today. I also ran into the genetic counselor in the cafeteria and caught up with her. She's the one who had the awful job of calling us to deliver the news of the trisomy 21. We saw 3 people we knew in the cafeteria. Wonder how many we'll know in another 3 weeks...
It was awful leaving Alexis to go home, but great to see my boys. They had finally asked about me today. Glad to know they noticed I was gone--5 days later.
She looked really good today, really tired. She appeared a little less jaundiced than yesterday. I was thrilled when they let me hold her this afternoon for a while. She slept the whole time despite my attempts to wake her. Of course the minute they took her back to place in her bassinet and Jason went to change her diaper, she woke. She looked very groggy, but kept her eyes open for a while. Hopefully she'll be a bit more alert tomorrow, although there is some relief to seeing her so groggy as she doesn't appear to be in any sort of pain.
2 different chaplains stopped by to visit us today. I also ran into the genetic counselor in the cafeteria and caught up with her. She's the one who had the awful job of calling us to deliver the news of the trisomy 21. We saw 3 people we knew in the cafeteria. Wonder how many we'll know in another 3 weeks...
It was awful leaving Alexis to go home, but great to see my boys. They had finally asked about me today. Glad to know they noticed I was gone--5 days later.
Surgery Day
I'm really glad today is over. Now our little Alexis just has a long road of recovery. Jason and I were down in the NICU around 8 a.m. Jason was finally able to hold his daughter for the first time. She looked so comfortable laying there with her daddy. After about 45 minutes it was my turn and I was so excited that just before I held her, she openned her eyes. She was awake and seemed content the whole time I held her. I'd seen her eyes open for only seconds before today and it just seemed right that she could see me and know we were there. During that time, the neonatologist told us that during the echo yesterday, they did see a very small hole in her heart. Not a huge concern as it will hopefully heal itself, but it is something they will watch. The pediatric surgeon, Dr. B, also came and spoke to us briefly explaining what they would do and some of the risks involved. They took her away to surgery at 10 a.m.
It was a long couple of hours. Mom and Dad, Jim and Connie, and Josh were all at the hospital with us during that time. They boys are at Aunt Paula's house (Thank You Paula and Ron!). Finally at 12:30 Dr. B came to my hospital room and told us that things had gone well. In addition to fixing the duodenal atresia, they had found a perferation in the small intestine that they repaired. So now instead of 1 thing to monitor for leaks and problems, they have 2. But he was pleased that Lexi tolerated the surgery well. Many tears of relief were shed. He told us to wait about a half hour before going to see her.
Alexis seems to be doing well. She's on pain medication of course. She now has another IV in the other hand. The poor baby! She has a vent in her mouth, a tube in her nose (to empty the contents of her stomach), a PICC line in her right foot, and an IV in each hand. They will leave the IV's in as long as they are working okay, but when the time comes that they need to be replaced, they will remove the IV and leave them out. Her left foot is absolutely purple from all the shots and blood draws. Thank goodness she almost always appears to me to be calm and sleeping, even though the nurses say she can get really feisty. But who can blame her?!
I was officially discharged this evening at 11 p.m. and even though most of the rooms here are filling up, they let me stay in a room tonight. We will have to be gone by 9 or 10 in the morning. We've had a wonderful experience here at Women's Hospital. The nurses are all so kind, so accomidating. I will stay around here for most of the day tomorrow and then go home tomorrow evening to see my boys, who I haven't seen since Sunday night. They've been having so much fun being at Grandma and Pop Pop's house with Uncle Josh and then at Aunt Paula's, they hardly realize we're gone, for which I'm very grateful. They haven't asked to see their sister and I'm not going to suggest it. If they ask, we'll take them, but for now we'll let Lexi heal and hopefully by the time they want to see her, some of the wires or tubes will be gone.
Thursday, April 9, 2009
Wednesday, April 8, 2009
NICU--Day 2
Today was a crazy day--maybe not in the eyes of the NICU nurses. It was probably all quite normal for them. But it felt that way to me and now I'm really tired. But I want to get the details of the day written down before I forget.
When Jason and I went down to visit Lexi this morning, she already looked better to me only because all the tape that holds her vent in place had been changed and didn't look so messy and overwhelming. She still hadn't had her hair washed and her blonde fuzz was still quite matted and messy. Soon after arriving, a neonatologist came to see us and told us that in an ultrasound, it looked as though there was some calcifications that they would look into tomorrow during the surgery. Sometimes these occur due to a perferation along the intestine which will often heal itself. They said it was probably nothing to worry about. He confirmed that the surgery is scheduled for tomorrow at 10 a.m. The nurse said that we can hold her before she goes into surgery but we'll need to be there around 8 a.m.
Soon after talking to the doctor, they came to do the echocardiogram to make sure the heart was okay. The tech didn't see anything concerning and the fact that no cardiologist came to talk to us about it indicates that everything is fine.
Right after the heart scan, the nurse was listening to Lexi's lungs and thought the left lower lobe sounds were diminished. A respiratory therapist and the neonatologist agreed, so an x-ray was done to check the placement of the vent. The x-ray revealed that the vent needed to be inserted a half centimeter deeper and once they did that, her lungs sounded fine. Whew.
When I returned to see Lexi later in the afternoon with Pop Pop and JoJo, I was thrilled when the nurse asked me if I wanted to take her temperature and change her diaper. Never thought I'd be so happy to change a diaper. Even though she can't digest yet, her body is still ridding itself of things from when she was in utero.
I returned to the room and met with the lactation consultant. Ugh. I'm not one of those people who thrives on bonding with my child while nursing. Luckily, the consultant wasn't one of those hard core, my way or the highway, breast feed or die types. But this lactation consultant had to be the most boring, personality-free women I've ever met. She made me so tired! She left her number if I needed anything. I may call her tonight if I have any difficulty falling asleep...
Later in the afternoon, a PICC line was placed in her right foot. She still has her IV for now but hopefully won't need it much longer since she has the PICC line. She had visits from Jason's parents and sister. When I returned to visit Lexi in the evening the nurse finally gave her a good bath. Her fuzzy blonde hair just cracks me up, pointing straight up. It's just screaming for a big bow. Her weight is now at 5 lbs 8 oz.
I am feeling great and will be discharged from the hospital tomorrow. Luckily, as long as there are extra rooms on the unit, they will discharge me in the computer at 11 p.m., but I can stay an extra night in the hospital. If that doesn't work, a social worker can arrange for me to stay in a room and the hospital's hotel nearby.
Time for bed. Tomorrow is sure to be a long day...
When Jason and I went down to visit Lexi this morning, she already looked better to me only because all the tape that holds her vent in place had been changed and didn't look so messy and overwhelming. She still hadn't had her hair washed and her blonde fuzz was still quite matted and messy. Soon after arriving, a neonatologist came to see us and told us that in an ultrasound, it looked as though there was some calcifications that they would look into tomorrow during the surgery. Sometimes these occur due to a perferation along the intestine which will often heal itself. They said it was probably nothing to worry about. He confirmed that the surgery is scheduled for tomorrow at 10 a.m. The nurse said that we can hold her before she goes into surgery but we'll need to be there around 8 a.m.
Soon after talking to the doctor, they came to do the echocardiogram to make sure the heart was okay. The tech didn't see anything concerning and the fact that no cardiologist came to talk to us about it indicates that everything is fine.
Right after the heart scan, the nurse was listening to Lexi's lungs and thought the left lower lobe sounds were diminished. A respiratory therapist and the neonatologist agreed, so an x-ray was done to check the placement of the vent. The x-ray revealed that the vent needed to be inserted a half centimeter deeper and once they did that, her lungs sounded fine. Whew.
When I returned to see Lexi later in the afternoon with Pop Pop and JoJo, I was thrilled when the nurse asked me if I wanted to take her temperature and change her diaper. Never thought I'd be so happy to change a diaper. Even though she can't digest yet, her body is still ridding itself of things from when she was in utero.
I returned to the room and met with the lactation consultant. Ugh. I'm not one of those people who thrives on bonding with my child while nursing. Luckily, the consultant wasn't one of those hard core, my way or the highway, breast feed or die types. But this lactation consultant had to be the most boring, personality-free women I've ever met. She made me so tired! She left her number if I needed anything. I may call her tonight if I have any difficulty falling asleep...
Later in the afternoon, a PICC line was placed in her right foot. She still has her IV for now but hopefully won't need it much longer since she has the PICC line. She had visits from Jason's parents and sister. When I returned to visit Lexi in the evening the nurse finally gave her a good bath. Her fuzzy blonde hair just cracks me up, pointing straight up. It's just screaming for a big bow. Her weight is now at 5 lbs 8 oz.
I am feeling great and will be discharged from the hospital tomorrow. Luckily, as long as there are extra rooms on the unit, they will discharge me in the computer at 11 p.m., but I can stay an extra night in the hospital. If that doesn't work, a social worker can arrange for me to stay in a room and the hospital's hotel nearby.
Time for bed. Tomorrow is sure to be a long day...
Tuesday, April 7, 2009
She's Here!!
Oh what a day! It was a long miserable night of cramping and other unpleasant events I won't go into detail about. So I had a feeling things were starting to progress but unsure. I had an appointment with Dr. Brazus at 9:20 who was astonished at my size when she walked in. I told her that if I didn't deliver this baby today, I'd be either suicidal or homicidal. I was up to 48 cm, 5 cm dilated and totally effaced. And she could feel the fluid sack hanging down and ready to burst. (Sorry for the gross details.) She wanted to call and ambulance or deliver me at Riverview but I refused and insisted Jason could drive me to Women's. No problem.
We got to Women's Hospital around 10:30 and they brought me straight to my room. My contractions were already 3 minutes apart. I had an epidural at 11:30 a.m. and no more pain. Glory!!! The big flood came at 12:15 (they broke my water--quickest weight loss program around). At 1:15 I was dilated to 10 and the doctors started moving in. The NICU team was here (4 of them), 2 OBGYN's, 2 nurses and a student nurse. Two contractions worth of pushes and she was out. So easy! Wish everyone could have such an easy delivery. Of course, following the baby's arrival, came the follow up flood of '09--all the fluid that was behind the baby came out soaking Jason and the dr. It was hysterical!
Alexis Elizabeth Smith was born at 1:34 p.m. on April 7, 2009. She is 5 lbs 12 oz and was 19" long. She was able to breath on her own, but wasn't getting enough oxygen so they placed a breathing tube while she was still in our room. We got to see her before she was taken to the NICU but I hadn't gotten to hold her yet. I had been told that if she had a breathing tube, I wouldn't be able to hold her because of all the tubing which made me very sad.
After an hour or so of recovery, we were taken to the recovery room, but first got to stop in at the NICU to see our little girl. Wires and tubes are everywhere and it breaks my heart to see it, but she's so beautiful! Her hair looks blonde, but they still haven't washed it, so it's a bit matted. But I was so grateful and surprised when the student nurse asked the NICU nurse if I could hold her and she said yes. Perfect.
Visitors today included all 4 grandparents, Aunt Paula, Christina, Tanya and Dr. Brazus. I was so touched that Dr. B. came to see us and especially happy when she told Jason she liked the name Alexis and he agreed to the name. If not for her, the Pop Pop's were going to name her Tsunami (not that Gramma Connie would be able to pronounce it). The surgery for the duodenal atresia has yet to be scheduled.
I'm feeling great and getting ready to head back to the NICU to see my baby. Still unsure when the boys will be by to meet their sister, but Nicholas is NOT in agreement with the name. God bless Uncle Josh for watching the boys today. Thank you to EVERYONE for all the love, prayers, kind words, and support. It means the world to us.
We got to Women's Hospital around 10:30 and they brought me straight to my room. My contractions were already 3 minutes apart. I had an epidural at 11:30 a.m. and no more pain. Glory!!! The big flood came at 12:15 (they broke my water--quickest weight loss program around). At 1:15 I was dilated to 10 and the doctors started moving in. The NICU team was here (4 of them), 2 OBGYN's, 2 nurses and a student nurse. Two contractions worth of pushes and she was out. So easy! Wish everyone could have such an easy delivery. Of course, following the baby's arrival, came the follow up flood of '09--all the fluid that was behind the baby came out soaking Jason and the dr. It was hysterical!
Alexis Elizabeth Smith was born at 1:34 p.m. on April 7, 2009. She is 5 lbs 12 oz and was 19" long. She was able to breath on her own, but wasn't getting enough oxygen so they placed a breathing tube while she was still in our room. We got to see her before she was taken to the NICU but I hadn't gotten to hold her yet. I had been told that if she had a breathing tube, I wouldn't be able to hold her because of all the tubing which made me very sad.
After an hour or so of recovery, we were taken to the recovery room, but first got to stop in at the NICU to see our little girl. Wires and tubes are everywhere and it breaks my heart to see it, but she's so beautiful! Her hair looks blonde, but they still haven't washed it, so it's a bit matted. But I was so grateful and surprised when the student nurse asked the NICU nurse if I could hold her and she said yes. Perfect.
Visitors today included all 4 grandparents, Aunt Paula, Christina, Tanya and Dr. Brazus. I was so touched that Dr. B. came to see us and especially happy when she told Jason she liked the name Alexis and he agreed to the name. If not for her, the Pop Pop's were going to name her Tsunami (not that Gramma Connie would be able to pronounce it). The surgery for the duodenal atresia has yet to be scheduled.
I'm feeling great and getting ready to head back to the NICU to see my baby. Still unsure when the boys will be by to meet their sister, but Nicholas is NOT in agreement with the name. God bless Uncle Josh for watching the boys today. Thank you to EVERYONE for all the love, prayers, kind words, and support. It means the world to us.
Friday, April 3, 2009
Frustrated, irritated, and my feet are fat
Finally got a call this morning from Dr. Brazus's nurse telling me to come in today at 2:30. I was glad to go in because I've had these sharp needle-like pains in my upper abdomen since last night. Quite painful, but on the plus side, it makes me not notice the back pain so much.
So I went to the doctor. I was up 4 more pounds since I was there 3 days ago. Blood pressure was around 145/93. She measured my stomach which should measure 37 cm, measured 42 cm on Tuesday and today was up to 44 cm. And I'm 4 cm dialated. Apparently none of this is concerning enough to do anything about it. I told Dr. Brazus that on Wednesday I'd had 9 contractions in an hour, left a message at MFM but never did receive a call back. Dr. B. told me that from now on I should call their office and they will contact MFM for me. She wants to start seeing me twice a week now. If my water breaks (there's gonna be a flood!) I am to NOT mess around and get to the hospital. She's afraid that much fluid could push out some of the cord or something. (MFM, by the way, called me today, not to return my call from Wednesday, but to reschedule my appt for next week. It's now on Wed at 12:45 instead of Tuesday afternoon.) I told her about the sharp pains in my stomach and she didn't have any thoughts on it. She asked what MFM said. Nothing. Dr. Brazus is a bit surprised that they have me scheduled to deliver at 39 weeks (standard for MFM) as if it were up to her, she'd deliver me at 38. She told me to err on the side of caution, call with any concerns. Wish it wasn't the weekend. Hate trying to get through to doctors on a weekend...
It's very frustrating. It's not that I feel something is wrong. I can still feel the baby move, she has a good heart rate. But I feel so miserable and it just seems like, what is the point in continuing to wait since I'm now full term? I start questioning myself with thoughts of, "should I be questioning the doctors more?", "should I be making more of a stink?" But I have to trust that they know what they're doing and ride this out. I can't let myself start doubting, questioning, and then drive myself crazy with worry.
Wish my pants fit.
So I went to the doctor. I was up 4 more pounds since I was there 3 days ago. Blood pressure was around 145/93. She measured my stomach which should measure 37 cm, measured 42 cm on Tuesday and today was up to 44 cm. And I'm 4 cm dialated. Apparently none of this is concerning enough to do anything about it. I told Dr. Brazus that on Wednesday I'd had 9 contractions in an hour, left a message at MFM but never did receive a call back. Dr. B. told me that from now on I should call their office and they will contact MFM for me. She wants to start seeing me twice a week now. If my water breaks (there's gonna be a flood!) I am to NOT mess around and get to the hospital. She's afraid that much fluid could push out some of the cord or something. (MFM, by the way, called me today, not to return my call from Wednesday, but to reschedule my appt for next week. It's now on Wed at 12:45 instead of Tuesday afternoon.) I told her about the sharp pains in my stomach and she didn't have any thoughts on it. She asked what MFM said. Nothing. Dr. Brazus is a bit surprised that they have me scheduled to deliver at 39 weeks (standard for MFM) as if it were up to her, she'd deliver me at 38. She told me to err on the side of caution, call with any concerns. Wish it wasn't the weekend. Hate trying to get through to doctors on a weekend...
It's very frustrating. It's not that I feel something is wrong. I can still feel the baby move, she has a good heart rate. But I feel so miserable and it just seems like, what is the point in continuing to wait since I'm now full term? I start questioning myself with thoughts of, "should I be questioning the doctors more?", "should I be making more of a stink?" But I have to trust that they know what they're doing and ride this out. I can't let myself start doubting, questioning, and then drive myself crazy with worry.
Wish my pants fit.
Thursday, April 2, 2009
Oops!
So I was just looking at my blog and realized that the post I wrote on Tuesday afternoon was still in draft form and didn't post. Oops. Hope you all didn't think I was out birthin' some baby. Don't know what happened to the post, but now you know I came back home.
I went to my conference yesterday and called Dr. Brazus during the first break, as instructed, even though I wasn't sure why (assumed it was to do another pre-eclampsia check). Got a message from her nurse Kim saying Brazus was out on Wednesdays and so she'd talk to her and call me back Thursday.
As I sat in my conference on Wednesday afternoon, I started having contractions. Nothing unusual--I'm sure they were more of the Braxton Hicks contractions that I've been having for months, but there were more than usual. 9 within an hour to be exact. So even though I knew it wasn't the real thing, I had been told to check in if I ever had more than 6 in an hour. And even though I wasn't concerned, I didn't know if that might be some sign of preeclampsia. So I called MFM at 4 p.m., selected the option to talk to a dr and got a voice mail for some administrative assistant. Left her a message and have never received a call back. The contractions have since diminished (they had by last evening acutally) but REALLY glad I wasn't having an emergency of some sort. I'll be sure to clarify at my next appointment, who to leave a message for if I need to call in again.
I also have never received a call back from Dr. Brazus's office. I was back in my conference again today and when I left at 2:30, I called again and left another message for Kim. It's really not like her to not call me back. Hmmmmm. Thank goodness I'm feeling fine, have felt the baby move plenty today, etc. I think I'll probably let it go and just have Paula take my bp from time to time. I have another appt scheduled for Tuesday at St. Vincent Carmel--another BPP and another check up with Dr. Brazus Tuesday morning.
A lot of people have been asking for updates on a name we have selected. For the record: We don't have one yet. Really. We're not holding out on you. We really don't have a name. I swear. With Nicholas and Blake, we went to the hospital with 3 names picked out and waited until we saw the baby to select one of them. Right now I have a list of about 6 or 7 names that Jason hasn't totally vetoed. I'm hoping he'll go with one of the those once the baby comes. He's only given me 2 names, both of which I vetoed.
Nothing else to report for now. As of today I'm officially done with work. April is officially here. I'm ready to get this baby OUT!
I went to my conference yesterday and called Dr. Brazus during the first break, as instructed, even though I wasn't sure why (assumed it was to do another pre-eclampsia check). Got a message from her nurse Kim saying Brazus was out on Wednesdays and so she'd talk to her and call me back Thursday.
As I sat in my conference on Wednesday afternoon, I started having contractions. Nothing unusual--I'm sure they were more of the Braxton Hicks contractions that I've been having for months, but there were more than usual. 9 within an hour to be exact. So even though I knew it wasn't the real thing, I had been told to check in if I ever had more than 6 in an hour. And even though I wasn't concerned, I didn't know if that might be some sign of preeclampsia. So I called MFM at 4 p.m., selected the option to talk to a dr and got a voice mail for some administrative assistant. Left her a message and have never received a call back. The contractions have since diminished (they had by last evening acutally) but REALLY glad I wasn't having an emergency of some sort. I'll be sure to clarify at my next appointment, who to leave a message for if I need to call in again.
I also have never received a call back from Dr. Brazus's office. I was back in my conference again today and when I left at 2:30, I called again and left another message for Kim. It's really not like her to not call me back. Hmmmmm. Thank goodness I'm feeling fine, have felt the baby move plenty today, etc. I think I'll probably let it go and just have Paula take my bp from time to time. I have another appt scheduled for Tuesday at St. Vincent Carmel--another BPP and another check up with Dr. Brazus Tuesday morning.
A lot of people have been asking for updates on a name we have selected. For the record: We don't have one yet. Really. We're not holding out on you. We really don't have a name. I swear. With Nicholas and Blake, we went to the hospital with 3 names picked out and waited until we saw the baby to select one of them. Right now I have a list of about 6 or 7 names that Jason hasn't totally vetoed. I'm hoping he'll go with one of the those once the baby comes. He's only given me 2 names, both of which I vetoed.
Nothing else to report for now. As of today I'm officially done with work. April is officially here. I'm ready to get this baby OUT!
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