I don't allow myself to believe in jinxes or any superstitions for that matter, but every time I put on Facebook that Emma is coming home it never happens. Although when I came to the hospital today and learned we weren't leaving "jinx" was the first word that popped into my head.
They want to give me another day to learn how to do the NG feedings. Which I am grateful for. I want to know that I can in fact put the tube in her stomach, and not her lungs, successfully. Half the battle is getting her to hold still. Emma is quite the fighter.
Emma's feedings have taken a big hit since the feeding tube was placed. They want her to eat 55 milliliters every 3 hours. She would have a couple feedings that she would eat all 55 mils before the feeding tube, but at least half of her feedings would be in the 35-45 mil range. Since the tube has been in place she ate 40 mils on her first feeding. 20 mils on her second and then through the night she at 15 mils every feeding. This morning she had another 40 mils and then back to 15.
I'm hoping she is just adjusting to the tube. I know it irritates her, but I was hoping for better results this morning. It worries me that she won't want to eat at all soon. No eating = surgery now.
On another note, I mentioned yesterday she had another echocardiogram. I got the results last night as I was leaving. Her VSD has never shown resistance to the blood flowing through the hole. Holes that show resistance create more pressure, which could be a sign that the hole is starting to close. Yesterday Emma's hole had resistance. I'm told it is just the smallest amount of resistance there can possibly be, but there is resistance! I just want to stand on the roof and shout it to the world! Resistance is a great thing. Emma's echos have never come back with good news. It's usually the opposite. I can't help but hope that we might continue to see positive results. Sure maybe the hole won't close, but it gives me hope that the chance is still there.
Saturday, April 21, 2012
Friday, April 20, 2012
Step 5
We now have a feeding tube. Which I learned how to put in and administer food through. Oh how under qualified I am to do this! I do not feel comfortable putting a tube down my daughter's nose into her stomach.
I have yet to actually place it myself. I just learned the way to measure and then stick it down, followed by how to put formula in it by watching. It's just a matter of time until she learns how to rip that thing out and then I have to step up to the plate. Tate and Trey got very good at taking those out. No matter how much we taped them down, those tiny fingers would always find a way to slip under the tube. However, the wonderful nurses that took care of them replaced them. This is all new.
Emma will eat as much as she can. Once she can't take anymore I then feed her the difference through the NG tube. If we get to a point that she cannot take any formula in on her own they will operate.
Emma hates the NG tube. When she first tried eating she would have a horrible look on her face every time she swallowed. It is causing her to gag. A lot. Which makes my heart race. A lot. I think I'm figuring out ways to lessen her gagging. What a learning experience this is.
If she tolerates her feedings well for the next 24 hours with the tube in place it looks like we are going home. Her breathing is in an area we can tolerate. Her medications seem to be balancing things OK. Now she needs to gain weight. They are also setting us up with Home Health & Hospice. They will come and help if we can't get the tube in on our own. They will also make sure we have all the medical equipment we need.
We have steadily marched through all the steps to prevent surgery. #5 is a place I hoped to never see. As long as we can keep her gaining weight we can get closer to the six month mark they so desperately want to hit.
Today I've decided I'm not going to think about 5 months from now. It's too overwhelming. My new goal is to make it to the 26th. One week. Everyday will be triumphant if we survive once we get home. I was scared to go home with oxygen and a heart monitor. I can use those with ease now. I am hoping the same will happen with this.
Having a feeding tube will be so much easier in many ways. She won't be connected to the wall. She can move as she pleases, or as I please.
This picture was taken a couple minutes after the tube was put in. Her expression encompasses the situation well I think. She keeps looking at me wide eyed trying to figure out what it is we are doing to her now.
Emma had another x-ray this morning. It showed no change. Her doctors are satisfied with how she is breathing now. Things might not change until the hole is closed. Emma creates her own normal. Her blood work came back looking much better than before. She is taking her new medication well. She also had an echocardiogram. I hate how I sit in the room with the tech that I know can tell me if things are better or worse, but they aren't allowed to tell you. I haven't heard back from her cardiologist yet on what he saw. I'm not expecting much to change. I'm always hoping it will, but realistically I'm just hoping she isn't getting worse.
I have yet to actually place it myself. I just learned the way to measure and then stick it down, followed by how to put formula in it by watching. It's just a matter of time until she learns how to rip that thing out and then I have to step up to the plate. Tate and Trey got very good at taking those out. No matter how much we taped them down, those tiny fingers would always find a way to slip under the tube. However, the wonderful nurses that took care of them replaced them. This is all new.
Emma will eat as much as she can. Once she can't take anymore I then feed her the difference through the NG tube. If we get to a point that she cannot take any formula in on her own they will operate.
Emma hates the NG tube. When she first tried eating she would have a horrible look on her face every time she swallowed. It is causing her to gag. A lot. Which makes my heart race. A lot. I think I'm figuring out ways to lessen her gagging. What a learning experience this is.
If she tolerates her feedings well for the next 24 hours with the tube in place it looks like we are going home. Her breathing is in an area we can tolerate. Her medications seem to be balancing things OK. Now she needs to gain weight. They are also setting us up with Home Health & Hospice. They will come and help if we can't get the tube in on our own. They will also make sure we have all the medical equipment we need.
We have steadily marched through all the steps to prevent surgery. #5 is a place I hoped to never see. As long as we can keep her gaining weight we can get closer to the six month mark they so desperately want to hit.
Today I've decided I'm not going to think about 5 months from now. It's too overwhelming. My new goal is to make it to the 26th. One week. Everyday will be triumphant if we survive once we get home. I was scared to go home with oxygen and a heart monitor. I can use those with ease now. I am hoping the same will happen with this.
Having a feeding tube will be so much easier in many ways. She won't be connected to the wall. She can move as she pleases, or as I please.
Emma had another x-ray this morning. It showed no change. Her doctors are satisfied with how she is breathing now. Things might not change until the hole is closed. Emma creates her own normal. Her blood work came back looking much better than before. She is taking her new medication well. She also had an echocardiogram. I hate how I sit in the room with the tech that I know can tell me if things are better or worse, but they aren't allowed to tell you. I haven't heard back from her cardiologist yet on what he saw. I'm not expecting much to change. I'm always hoping it will, but realistically I'm just hoping she isn't getting worse.
Thursday, April 19, 2012
Another Day
Emma is still doing the same. Same is better than worse. I'm grateful she isn't doing worse. They started her on a different medication today. The diuril wasn't working the way we anticipated. It was causing some problems. She started throwing up the last two days and I'm convinced that's why. She hasn't even spit up once while in the hospital.
Her new medication is called aldactone. Which I just learned cannot be picked up at just any pharmacy. They actually have to make the drug, or compound it, was their term. Thankfully the pharmacist here went and found a pharmacy in Saratoga Springs that is right by us, that can make it.
Her doctors are now starting to wonder if there is another reason behind why she is breathing so fast. They are wondering if she has a very narrow airway that is not supported well. That could also cause rapid breathing. There are tests they could do, but they are quite invasive and involve sticking a lot of tubes down her nose to her throat. At this point they aren't interested in doing those, especially because it is something she will most likely grow out of as she gets bigger. So we are just keeping that in mind for now.
When Emma was first born the murmur was really hard to hear. Many a doctor did not ever hear the murmur. Then after it was caught, most nurses could not hear it and doctors would really have to search for it and could only hear it in one spot on her back. The last 2 days I have had multiple people tell me how loud her murmur was. These were people who had never seen Emma before. I didn't know what to make of this.
Today when her cardiologist rounded on her, he pointed out that the murmur was louder. This can either mean something awesome, or something not awesome. As holes in the heart close they get louder, because the pressure rises in that one area. That is the awesome part. Or it could mean that there is just a lot more blood flowing through that hole. That part is not awesome. Her hole won't get bigger. It is what it is. But the amount of blood flowing through can change constantly. I'm really holding out hope that the hole is closing. Oh how I will be praying that is the case.
They are going to do a follow up x-ray tomorrow to see if we are making any headway in the fluid in her heart and lungs. In the next couple days they are going to do another echocardiogram. That will be able to tell us if her hole is closing or if there is more blood flowing. So fingers crossed!
Her new medication is called aldactone. Which I just learned cannot be picked up at just any pharmacy. They actually have to make the drug, or compound it, was their term. Thankfully the pharmacist here went and found a pharmacy in Saratoga Springs that is right by us, that can make it.
Her doctors are now starting to wonder if there is another reason behind why she is breathing so fast. They are wondering if she has a very narrow airway that is not supported well. That could also cause rapid breathing. There are tests they could do, but they are quite invasive and involve sticking a lot of tubes down her nose to her throat. At this point they aren't interested in doing those, especially because it is something she will most likely grow out of as she gets bigger. So we are just keeping that in mind for now.
When Emma was first born the murmur was really hard to hear. Many a doctor did not ever hear the murmur. Then after it was caught, most nurses could not hear it and doctors would really have to search for it and could only hear it in one spot on her back. The last 2 days I have had multiple people tell me how loud her murmur was. These were people who had never seen Emma before. I didn't know what to make of this.
Today when her cardiologist rounded on her, he pointed out that the murmur was louder. This can either mean something awesome, or something not awesome. As holes in the heart close they get louder, because the pressure rises in that one area. That is the awesome part. Or it could mean that there is just a lot more blood flowing through that hole. That part is not awesome. Her hole won't get bigger. It is what it is. But the amount of blood flowing through can change constantly. I'm really holding out hope that the hole is closing. Oh how I will be praying that is the case.
They are going to do a follow up x-ray tomorrow to see if we are making any headway in the fluid in her heart and lungs. In the next couple days they are going to do another echocardiogram. That will be able to tell us if her hole is closing or if there is more blood flowing. So fingers crossed!
Wednesday, April 18, 2012
Puzzles
I've tried all my life to like puzzles. My mother loves them, I just don't have the patience for them. I am now living the puzzle Emma has put before us. I think we've got all the border pieces, but filling in the middle is proving difficult and frustrating.
So Emma's first medication, lasix, is not working as we found out yesterday. It is not removing the fluid in her heart and kidneys. They added the second medication. They did blood work today, which they have been watching while she has been on her medication. They check the sodium levels to make sure her kidneys are processing all the extra sodium they are receiving from her medications. In the blood work it also checks the function of the kidneys. It came back today showing that they kidneys are not receiving enough fluid. Which makes us thing we are drying her out.
This is where everyone started scratching their heads. We have been closely monitoring Emma's input vs output. Babies should put out the around the same amount they are taking in. In Emma's case, because we have her on all these water pills, she should put out more than she is taking in, because the fluid in her heart and lungs should be leaving her body.
For the last week Emma has been positive, meaning she is taking in more than she is putting out. By a lot. That is another reason they started the second medication. They don't understand why her test would come back showing her kidneys aren't getting enough fluid. If anything they should be getting too much. The pieces aren't fitting.
They decided to take her off her second medication for 12 hours to see what she does. If her output is positive 100cc's+ they are going to put her back on it and try again.
Emma was not eating very well today. Her doctor has her on a high calorie formula, so she can take in less volume and still get the same calories. Our goal was to help make feeding easier. Her doctors want her to drink around 50 milliliters a feeding (every 3 to 4 hours) When I left her last night she drank 70 mil. I was elated! It was the most she has ever taken in. When I came in today I found out 45 mil was her highest through the night. The last feeding I did today was 35 mil. Emma was eating every three hours consistently. Today she was going four. We are getting worse.
Her breathing has plateaued. She's definitely better than when she was admitted, but not improving.
They haven't been successful in removing the fluid with medication. At this point I can't see a time when we will come home before her surgery.
So Emma's first medication, lasix, is not working as we found out yesterday. It is not removing the fluid in her heart and kidneys. They added the second medication. They did blood work today, which they have been watching while she has been on her medication. They check the sodium levels to make sure her kidneys are processing all the extra sodium they are receiving from her medications. In the blood work it also checks the function of the kidneys. It came back today showing that they kidneys are not receiving enough fluid. Which makes us thing we are drying her out.
This is where everyone started scratching their heads. We have been closely monitoring Emma's input vs output. Babies should put out the around the same amount they are taking in. In Emma's case, because we have her on all these water pills, she should put out more than she is taking in, because the fluid in her heart and lungs should be leaving her body.
For the last week Emma has been positive, meaning she is taking in more than she is putting out. By a lot. That is another reason they started the second medication. They don't understand why her test would come back showing her kidneys aren't getting enough fluid. If anything they should be getting too much. The pieces aren't fitting.
They decided to take her off her second medication for 12 hours to see what she does. If her output is positive 100cc's+ they are going to put her back on it and try again.
Emma was not eating very well today. Her doctor has her on a high calorie formula, so she can take in less volume and still get the same calories. Our goal was to help make feeding easier. Her doctors want her to drink around 50 milliliters a feeding (every 3 to 4 hours) When I left her last night she drank 70 mil. I was elated! It was the most she has ever taken in. When I came in today I found out 45 mil was her highest through the night. The last feeding I did today was 35 mil. Emma was eating every three hours consistently. Today she was going four. We are getting worse.
Her breathing has plateaued. She's definitely better than when she was admitted, but not improving.
They haven't been successful in removing the fluid with medication. At this point I can't see a time when we will come home before her surgery.
Tuesday, April 17, 2012
When it rains it pours
I hate rainy days. Bad things always happen when it rains. My boys act up more when it's raining. I hate when the bottoms of my pants are wet when I take my shoes off. The whole world just feels depressed. Me and rain... we don't get along.
Whenever a doctor has told us "We think you'll go home on _____ day" something always happens shortly after that shatters our hopes of ever leaving this place. I can't help but get my hopes up every time they say it. I just want to take my princess home with me so badly! As I put in my last post, they were going to move her to oral medication today. When I showed up at the hospital this morning I noticed she was still connected to her IV. Instantly I knew tomorrow wasn't our discharge day.
Throughout the night she was spending most of the time breathing 90-100 times a minute. They gave her an extra dose of her medication, but it didn't help much. Because of her problems while breathing they never took her off of the IV. They ordered an x-ray to see if her heart is still enlarged. If her heart is still enlarged they will add another medication to her mix. She has already maxed out the one she is currently on.
The x-ray came back showing "slight" improvement. So her heart is still enlarged just not as much. Her doctors are adding the second medication twice a day.
I think I've said before that they don't want to operate on Emma until she is six months. However, at some point the risk of surgery is less than the symptoms she is having. How I understand it is there are 5 steps we will take to try to get her to that 6 month mark.
1. Put her on lasix. Done and done.
2. Up her dosage on the lasix. Check
3. Add another diuretic called diuril. The lasix is also a diuretic, but seeing as how we've maxed out the amount she is allowed to have, we have to add another into the mix. Which we are starting today.
4. Up the dosage of the second diuretic.
5. Add a feeding tube. It's so hard for her to eat while working so hard to breathe. We would still let her try and eat, once she gets tired then I would supplement the difference in what she needs through the tube.
Once she is unable to eat at all on her own, the surgery becomes the next step regardless of how old she is. So we are already on number 3 of 5, with 5 months left to go.
I can't help but feel very discouraged today along with the mountain of emotions I'm constantly feeling. Part of me just wants to have the surgery now so it's over with. I hate seeing her this way, but she is so tiny. I can't imagine someone doing open heart surgery on her. Then again I don't ever want to think about that happening ever. Regardless of when they do it I will never be ready for her to go through that.
However, there are some positive points of the day. Emma has been oxygen free for over 24 hours!! She hasn't dipped below 80% oxygen once.
I love being able to see her beautiful face without anything blocking it, I'm sure Emma is more excited about it than I am.
Our second great thing of the days is I got a call from her geneticist. Our appointment has been moved from November 13 to May 23! It will be nice to see if they can give us more insight into Emma's disorder. I'm grateful for Emma's doctors that wrote letters on her behalf to help her get in earlier.
I know that trials make us stronger and we are blessed for them. Thankfully the Lord has been sprinkling us with blessings throughout this difficult time.
Whenever a doctor has told us "We think you'll go home on _____ day" something always happens shortly after that shatters our hopes of ever leaving this place. I can't help but get my hopes up every time they say it. I just want to take my princess home with me so badly! As I put in my last post, they were going to move her to oral medication today. When I showed up at the hospital this morning I noticed she was still connected to her IV. Instantly I knew tomorrow wasn't our discharge day.
Throughout the night she was spending most of the time breathing 90-100 times a minute. They gave her an extra dose of her medication, but it didn't help much. Because of her problems while breathing they never took her off of the IV. They ordered an x-ray to see if her heart is still enlarged. If her heart is still enlarged they will add another medication to her mix. She has already maxed out the one she is currently on.
 |
| Getting her x-ray |
I think I've said before that they don't want to operate on Emma until she is six months. However, at some point the risk of surgery is less than the symptoms she is having. How I understand it is there are 5 steps we will take to try to get her to that 6 month mark.
1. Put her on lasix. Done and done.
2. Up her dosage on the lasix. Check
3. Add another diuretic called diuril. The lasix is also a diuretic, but seeing as how we've maxed out the amount she is allowed to have, we have to add another into the mix. Which we are starting today.
4. Up the dosage of the second diuretic.
5. Add a feeding tube. It's so hard for her to eat while working so hard to breathe. We would still let her try and eat, once she gets tired then I would supplement the difference in what she needs through the tube.
Once she is unable to eat at all on her own, the surgery becomes the next step regardless of how old she is. So we are already on number 3 of 5, with 5 months left to go.
I can't help but feel very discouraged today along with the mountain of emotions I'm constantly feeling. Part of me just wants to have the surgery now so it's over with. I hate seeing her this way, but she is so tiny. I can't imagine someone doing open heart surgery on her. Then again I don't ever want to think about that happening ever. Regardless of when they do it I will never be ready for her to go through that.
However, there are some positive points of the day. Emma has been oxygen free for over 24 hours!! She hasn't dipped below 80% oxygen once.
Our second great thing of the days is I got a call from her geneticist. Our appointment has been moved from November 13 to May 23! It will be nice to see if they can give us more insight into Emma's disorder. I'm grateful for Emma's doctors that wrote letters on her behalf to help her get in earlier.
I know that trials make us stronger and we are blessed for them. Thankfully the Lord has been sprinkling us with blessings throughout this difficult time.
Monday, April 16, 2012
April 16
I honestly spent more time trying to come up with a title for today's blog than I did typing the blog entry. So today's date is all I could come up with.
Emma is doing better today. I think we are finally getting a head of all the fluid in her heart and lungs, finally! It's been a roller coaster of ups and downs this last week, but she has been oxygen free for about 8 hours with no problems. What this means is the fluid is clearing out of her lungs and it isn't as difficult for her to breathe. She still isn't breathing the way a "normal" infant should, but she won't be able to do that until the hole is closed.
Her doctors are hopeful that we will come home on Wednesday. They are going to give her medication to her orally starting tomorrow. If on Wednesday her heart x-ray comes back normal we get to leave. If we are truly lucky we will avoid the hospital for the next five months.
Emma is doing better today. I think we are finally getting a head of all the fluid in her heart and lungs, finally! It's been a roller coaster of ups and downs this last week, but she has been oxygen free for about 8 hours with no problems. What this means is the fluid is clearing out of her lungs and it isn't as difficult for her to breathe. She still isn't breathing the way a "normal" infant should, but she won't be able to do that until the hole is closed.
Her doctors are hopeful that we will come home on Wednesday. They are going to give her medication to her orally starting tomorrow. If on Wednesday her heart x-ray comes back normal we get to leave. If we are truly lucky we will avoid the hospital for the next five months.
Sunday, April 15, 2012
Emma Ruth
I have decided to attempt blogging again. Since getting pregnant with Emma, I've pretty much abandoned it all together. Between working, 3 boys and a difficult pregnancy there was little energy left to blog. Since Emma is a puzzle we are constantly putting together, I figured it would actually save me time to update her status here rather than text, call and email 50 different people all day long.
I always have interesting pregnancies, and Emma's was no different. At my 20 week ultrasound we found out that we were finally getting our girl, but they also didn't see any fluid in her stomach. That prompted a follow up ultrasound the following week. At 21 weeks they saw fluid in her stomach, but the ultrasound tech thought she saw a hole in her heart. The following day I was sent to Maternal Fetal Medicine to meet with Dr Schemmer who we know and love from many visits while pregnant with the twins.
They did an extensive ultrasound of her heart and couldn't find the hole. While in that ultrasound they noticed she had too much fluid in her kidneys and that I had too much amniotic fluid. I continued to see Dr. Schemmer every 4 weeks throughout my pregnancy. The fluid in Emma's kidneys got worse and worse as did my amniotic fluid. I had 3 times the amount of fluid I should've had. There are different disorders they can link extra fluid to they were muscular dystrophy, spina bifida and down syndrome.
Emma was incredibly active while I was pregnant with her. I think I was kicked more with her than I was with the twins. She was always moving and had a lot of room to do so. It was like water aerobics in there. Because of her activity, which always impressed her doctors, they were able to rule our muscular dystrophy and spina bifida. That left us with a 15% chance that she had down syndrome. We were told once she was born we would know by looking at her if she had it or not. Also, through all my appointments they continued to check her heart to find a hole. They never saw one.
March 15, 2012 Emma arrived! I was 39 weeks and 1 day. I have never been pregnant that long and I've never been so big or miserable in all my life. I had a planned c-section at Orem Community Hospital that morning and shortly after 7:30am she greeted us at 6lbs 15oz, 20 inches long.
Emma did not look like a down syndrome baby. We thought we were out of the woods. The weight was lifted, temporarily.
We know from my previous ultrasounds that we had some issues with her kidneys. They said she had a kink in her tubing that ran from the kidneys to the bladder. There was a chance it would self correct or she may need a procedure to fix it. After an ultrasound 3 days after she was born we discovered that the excess fluid in her kidneys had drastically gone down, she was urinating properly and it appears to have fixed itself. We will most likely do a follow up ultrasound at 2 months, just to make sure that everything is normal. Another weight lifted.
Saturday March 17, day three of Emma's life, she was tested for jaundice as all babies are. She tested extremely high and was put under lights. She remained under the lights for only one day and her bilirubin levels dropped back down. Jaundice makes babies very sleepy. Emma did not eat almost the whole day
Sunday March 18. She stopped having wet diapers. Her eating improved from the day before, but still no wet diapers. This is also the day her pediatrician heard a slight heart murmur.
Monday March 19, we were supposed to be discharged. Emma still had yet to give us a wet diaper in 24 hours. She was taken to their teeny tiny level 2 NICU to receive some fluids. We decided with her bilirubin levels being higher she became dehydrated. Her pediatrician decided to also run a test on her electrolytes to see what was going on. This came back with an insanely high sodium level, which could've been attributed to dehydration. The plan was to pump her full of fluids and check electrolytes the next day. She was not coming home with us.
Because I was breast feeding Emma and they still wanted me to feed her while she stayed at the hospital. The staff at Orem Community let me stay in my room for free. We just pretended I wasn't there. What an amazing blessing that was for me to stay with her that Monday night to feed her. They also rounded me up some food from the cafeteria for dinner and they have an amazing snack room on the floor that they let me continue to use as well.
Tuesday March 20, Emma is not able to breast feed well. She appeared to be having a hard time extracting milk. The twins had the same problem. I decided to pump milk and feed to her through a bottle, just like I did with Tate and Trey. Her electrolyte levels are unchanged even with all the IV fluid she received. Her doctors then tell us we are dealing with more than dehydration. After analyzing Emma's urine they discover her kidneys are not filtering any toxins. She is urinating water. They then begin to think she in fact has down syndrome. With the murmur in her heart and the problems with her kidneys and the fact they thought there was a chance before she was born they decide they are going to do the chromosome testing. She also needs better care than they can offer at Orem Community and she is transferred to the NICU at Utah Valley. They schedule an echo cardiogram to see what is causing the murmur in her heart.
Wednesday March 21 - Friday March 23. Emma is eating well with a bottle. Her electrolyte levels are slowly becoming normal. She is put back under the lights for jaundice. The blood is drawn for chromosome testing and sent to a lab. Her echo is done and comes back with bad news. She has two holes her heart. She has an ASD (Atrial Septal Defect) which we are told is not causing any problems, it will not need repair and she will live with it. She also has a VSD (Ventricular Septal Defect) which will need to be repaired. They then put her on oxygen. Her neonatologist wants to help relieve the pressure in her heart and wants her oxygen levels to be between 92 and 100% at all times.
Saturday March 24. Emma's completely removed from her IV and lights. Her levels are normal. We are told that if her labs come back normal on Sunday she will come home. Randy and I spend the night at the hospital to learn how to use her oxygen and heart monitor she came home with.
Sunday March 25 we are discharged. Emma's electrolytes are normal. Her bilirubin levels are still high, not high enough for lights, but high enough that I need to take her in on Tuesday to be retested.
Tuesday March 27. Emma's bilirubin is retested. It is still high. Babies this old should not still be having problems with jaundice, especially when they have already done photo therapy twice. Her pediatrician, Dr. Anderson, discovers that my breast milk is giving Emma jaundice. We switch her to formula. We haven't had any problems since. Dr Anderson also wonders why we are keeping Emma's oxygen levels so high. In his experience, children with a VSD need to have lower oxygen levels. I had an appointment with her cardiologist for the first time on the 5th. I am told to stay the course and wait and see him.
Emma's chromosomal testing came back this day also. She tested negative for down syndrome. However she has something infinitely more rare. So rare in fact, every doctor she has seen to this point has googled it. She has a disorder called Recombinant 8 Syndrome. You can click the link to read more about it. Apparently geneticists are insanely hard to get into. I currently have an appointment in November. The problems she is having with her heart are caused by this disorder, as were the kidney problems. Thankfully we don't appear to be having any other issues with her kidneys.
I was upset at first about not being able to see a geneticist quickly, but they can't cure her from what she has. We will be taking it day by day regardless of what they tell us. The Dr's at the University of Utah may not have ever seen a patient with her disorder anyway.
Thursday April 5 we meet Dr Hauffman, Emma's amazing Pediatric Cardiologist. He tells us that Emma has a 50/50 chance of the holes closing. If it doesn't close by 6 months he will operate. He also wonders why Emma's oxygen levels are kept high. Dr Hauffman was on vacation until the beginning of April and missed Emma's NICU stay. All tests were done in house and were read by a cardiologist at Primary Children's. All decisions were made by the neonatologist in NICU. He tells me to take her oxygen off. What a happy short lived time that was.
Friday April 6, Dr Anderson sees the report from Dr Hauffman. He doesn't want to take Emma's oxygen off cold turkey. I'm called and told to put it back on and that they are ordering a saturation test. Basically a monitor that tells us what her oxygen levels are. The cardiologist wants her oxygen to stay between 80-90%, but they are worried about her dropping below the 80%, which is lower than most babies are allowed to go, but a lower oxygen level helps the VSD.
Tuesday April 10, I pick up her saturation test. We are also moving on this day. We found a place at the end of March in the exact neighborhood we wanted. Because of the time we found it, we had to give 30 day notice in our place in Orem so we don't have to be out of till the end of April which has been good to give us time to clean and get everything out of there. Emma's breathing started to be very erratic. She had been breathing heavily due to the VSD. Her breathing was the worst when she was in her car seat when we were moving. I hoped that we were just stressing her out with the move..
Wednesday April 11, I kept Emma at our new house all day. That night things became awful. Her breathing was so fast she wasn't able to eat. I started to notice she was sweating while eating. Both were warning signs I was told to watch for.
Thursday April 12, I called her cardiologist first thing in the morning. I was up all night with Emma. She wasn't ever able to get a full feeding so she was up all night either trying to eat or wanting to be held. Her cardiologist told me to take her in to her pediatrician. The pediatrician we saw sent us to be admitted at the hospital. They did an x-ray and found that her heart was working too hard with the hole and was enlarged while trying to compensate. Babies should have between 30-40 respirations a minute. Emma was having 90-110 a minute.
Emma is breathing so fast because she has fluid in her lungs. The fluid is caused by the hole in her heart. The hole is sending blood from the left side of her heart to the right side. The right side of her heart sends blood to the lungs to be oxygenated. With that hole some blood is never leaving that cycle and it's creating a fluid build up in both her lungs and heart. They started her on lasix, it should help remove the fluid from her lungs and heart.
Friday April 13 - today Sunday April 15. Emma has taken us on a roller coaster with her breathing. It has definately improved from the day she was admitted. She has moments when she is normal, but she hangs around the 70-80's most of the time with peaks in the 100's still. They won't let her go home until 70 is her highest. They did another x-ray of her heart and it is still enlarged. Which means the fluid is not leaving her lungs or her heart. We are going to give her the lasix through and IV instead of orally. They did that the first 2 days she was here and it seemed to be more effective.
They've also upped the calories in her formula. Normal formula has 20 calories. She is now taking 26 calories. We are trying to give her as many calories as we can with as little effort. It's really hard for her to eat when he is breathing so fast. It also wears her down quickly.
So right now we are just staying the course. Hoping that the medication will work enough that we can take her home. Dr Hauffman doesn't want to operate on her heart until she is 6 months old. That will make the next 5 months incredibly interesting. Now that Emma has started medication the 50/50 chance of her heart closing is pretty much zero. Her Dr said once his patients start medication they usually don't see the hole close on it's own.
Emma is the most adorable baby I have ever seen. I love her to pieces. It breaks my heart to see her poor little body struggle to perform such basic functions.
Two days ago, while holding Emma at the hospital, I was telling her how much we missed her and wanted her to come home. This is what she did
I think she was trying to tell me something
And now one last picture. Because I just love to show off my beautiful girl
She cracks open one eye when she sleeps during the day. She's trying so hard not to miss anything.
I always have interesting pregnancies, and Emma's was no different. At my 20 week ultrasound we found out that we were finally getting our girl, but they also didn't see any fluid in her stomach. That prompted a follow up ultrasound the following week. At 21 weeks they saw fluid in her stomach, but the ultrasound tech thought she saw a hole in her heart. The following day I was sent to Maternal Fetal Medicine to meet with Dr Schemmer who we know and love from many visits while pregnant with the twins.
They did an extensive ultrasound of her heart and couldn't find the hole. While in that ultrasound they noticed she had too much fluid in her kidneys and that I had too much amniotic fluid. I continued to see Dr. Schemmer every 4 weeks throughout my pregnancy. The fluid in Emma's kidneys got worse and worse as did my amniotic fluid. I had 3 times the amount of fluid I should've had. There are different disorders they can link extra fluid to they were muscular dystrophy, spina bifida and down syndrome.
Emma was incredibly active while I was pregnant with her. I think I was kicked more with her than I was with the twins. She was always moving and had a lot of room to do so. It was like water aerobics in there. Because of her activity, which always impressed her doctors, they were able to rule our muscular dystrophy and spina bifida. That left us with a 15% chance that she had down syndrome. We were told once she was born we would know by looking at her if she had it or not. Also, through all my appointments they continued to check her heart to find a hole. They never saw one.
March 15, 2012 Emma arrived! I was 39 weeks and 1 day. I have never been pregnant that long and I've never been so big or miserable in all my life. I had a planned c-section at Orem Community Hospital that morning and shortly after 7:30am she greeted us at 6lbs 15oz, 20 inches long.
Emma did not look like a down syndrome baby. We thought we were out of the woods. The weight was lifted, temporarily.
We know from my previous ultrasounds that we had some issues with her kidneys. They said she had a kink in her tubing that ran from the kidneys to the bladder. There was a chance it would self correct or she may need a procedure to fix it. After an ultrasound 3 days after she was born we discovered that the excess fluid in her kidneys had drastically gone down, she was urinating properly and it appears to have fixed itself. We will most likely do a follow up ultrasound at 2 months, just to make sure that everything is normal. Another weight lifted.
Saturday March 17, day three of Emma's life, she was tested for jaundice as all babies are. She tested extremely high and was put under lights. She remained under the lights for only one day and her bilirubin levels dropped back down. Jaundice makes babies very sleepy. Emma did not eat almost the whole day
Sunday March 18. She stopped having wet diapers. Her eating improved from the day before, but still no wet diapers. This is also the day her pediatrician heard a slight heart murmur.
Monday March 19, we were supposed to be discharged. Emma still had yet to give us a wet diaper in 24 hours. She was taken to their teeny tiny level 2 NICU to receive some fluids. We decided with her bilirubin levels being higher she became dehydrated. Her pediatrician decided to also run a test on her electrolytes to see what was going on. This came back with an insanely high sodium level, which could've been attributed to dehydration. The plan was to pump her full of fluids and check electrolytes the next day. She was not coming home with us.
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| In the NICU at Orem Community |
Tuesday March 20, Emma is not able to breast feed well. She appeared to be having a hard time extracting milk. The twins had the same problem. I decided to pump milk and feed to her through a bottle, just like I did with Tate and Trey. Her electrolyte levels are unchanged even with all the IV fluid she received. Her doctors then tell us we are dealing with more than dehydration. After analyzing Emma's urine they discover her kidneys are not filtering any toxins. She is urinating water. They then begin to think she in fact has down syndrome. With the murmur in her heart and the problems with her kidneys and the fact they thought there was a chance before she was born they decide they are going to do the chromosome testing. She also needs better care than they can offer at Orem Community and she is transferred to the NICU at Utah Valley. They schedule an echo cardiogram to see what is causing the murmur in her heart.
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| This was her NICU on wheels |
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Wednesday March 21 - Friday March 23. Emma is eating well with a bottle. Her electrolyte levels are slowly becoming normal. She is put back under the lights for jaundice. The blood is drawn for chromosome testing and sent to a lab. Her echo is done and comes back with bad news. She has two holes her heart. She has an ASD (Atrial Septal Defect) which we are told is not causing any problems, it will not need repair and she will live with it. She also has a VSD (Ventricular Septal Defect) which will need to be repaired. They then put her on oxygen. Her neonatologist wants to help relieve the pressure in her heart and wants her oxygen levels to be between 92 and 100% at all times.
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| Emma doing photo therapy for her jaundice |
Saturday March 24. Emma's completely removed from her IV and lights. Her levels are normal. We are told that if her labs come back normal on Sunday she will come home. Randy and I spend the night at the hospital to learn how to use her oxygen and heart monitor she came home with.
Sunday March 25 we are discharged. Emma's electrolytes are normal. Her bilirubin levels are still high, not high enough for lights, but high enough that I need to take her in on Tuesday to be retested.
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| Emma's first trip in her car seat |
Tuesday March 27. Emma's bilirubin is retested. It is still high. Babies this old should not still be having problems with jaundice, especially when they have already done photo therapy twice. Her pediatrician, Dr. Anderson, discovers that my breast milk is giving Emma jaundice. We switch her to formula. We haven't had any problems since. Dr Anderson also wonders why we are keeping Emma's oxygen levels so high. In his experience, children with a VSD need to have lower oxygen levels. I had an appointment with her cardiologist for the first time on the 5th. I am told to stay the course and wait and see him.
Emma's chromosomal testing came back this day also. She tested negative for down syndrome. However she has something infinitely more rare. So rare in fact, every doctor she has seen to this point has googled it. She has a disorder called Recombinant 8 Syndrome. You can click the link to read more about it. Apparently geneticists are insanely hard to get into. I currently have an appointment in November. The problems she is having with her heart are caused by this disorder, as were the kidney problems. Thankfully we don't appear to be having any other issues with her kidneys.
I was upset at first about not being able to see a geneticist quickly, but they can't cure her from what she has. We will be taking it day by day regardless of what they tell us. The Dr's at the University of Utah may not have ever seen a patient with her disorder anyway.
Thursday April 5 we meet Dr Hauffman, Emma's amazing Pediatric Cardiologist. He tells us that Emma has a 50/50 chance of the holes closing. If it doesn't close by 6 months he will operate. He also wonders why Emma's oxygen levels are kept high. Dr Hauffman was on vacation until the beginning of April and missed Emma's NICU stay. All tests were done in house and were read by a cardiologist at Primary Children's. All decisions were made by the neonatologist in NICU. He tells me to take her oxygen off. What a happy short lived time that was.
Friday April 6, Dr Anderson sees the report from Dr Hauffman. He doesn't want to take Emma's oxygen off cold turkey. I'm called and told to put it back on and that they are ordering a saturation test. Basically a monitor that tells us what her oxygen levels are. The cardiologist wants her oxygen to stay between 80-90%, but they are worried about her dropping below the 80%, which is lower than most babies are allowed to go, but a lower oxygen level helps the VSD.
Tuesday April 10, I pick up her saturation test. We are also moving on this day. We found a place at the end of March in the exact neighborhood we wanted. Because of the time we found it, we had to give 30 day notice in our place in Orem so we don't have to be out of till the end of April which has been good to give us time to clean and get everything out of there. Emma's breathing started to be very erratic. She had been breathing heavily due to the VSD. Her breathing was the worst when she was in her car seat when we were moving. I hoped that we were just stressing her out with the move..
Wednesday April 11, I kept Emma at our new house all day. That night things became awful. Her breathing was so fast she wasn't able to eat. I started to notice she was sweating while eating. Both were warning signs I was told to watch for.
Thursday April 12, I called her cardiologist first thing in the morning. I was up all night with Emma. She wasn't ever able to get a full feeding so she was up all night either trying to eat or wanting to be held. Her cardiologist told me to take her in to her pediatrician. The pediatrician we saw sent us to be admitted at the hospital. They did an x-ray and found that her heart was working too hard with the hole and was enlarged while trying to compensate. Babies should have between 30-40 respirations a minute. Emma was having 90-110 a minute.
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| On Pediatrics |
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| Her hair refuses to do anything but stand up like she stuck a finger in a socket |
Emma is breathing so fast because she has fluid in her lungs. The fluid is caused by the hole in her heart. The hole is sending blood from the left side of her heart to the right side. The right side of her heart sends blood to the lungs to be oxygenated. With that hole some blood is never leaving that cycle and it's creating a fluid build up in both her lungs and heart. They started her on lasix, it should help remove the fluid from her lungs and heart.
Friday April 13 - today Sunday April 15. Emma has taken us on a roller coaster with her breathing. It has definately improved from the day she was admitted. She has moments when she is normal, but she hangs around the 70-80's most of the time with peaks in the 100's still. They won't let her go home until 70 is her highest. They did another x-ray of her heart and it is still enlarged. Which means the fluid is not leaving her lungs or her heart. We are going to give her the lasix through and IV instead of orally. They did that the first 2 days she was here and it seemed to be more effective.
They've also upped the calories in her formula. Normal formula has 20 calories. She is now taking 26 calories. We are trying to give her as many calories as we can with as little effort. It's really hard for her to eat when he is breathing so fast. It also wears her down quickly.
So right now we are just staying the course. Hoping that the medication will work enough that we can take her home. Dr Hauffman doesn't want to operate on her heart until she is 6 months old. That will make the next 5 months incredibly interesting. Now that Emma has started medication the 50/50 chance of her heart closing is pretty much zero. Her Dr said once his patients start medication they usually don't see the hole close on it's own.
Emma is the most adorable baby I have ever seen. I love her to pieces. It breaks my heart to see her poor little body struggle to perform such basic functions.
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| Emma on Easter |
And now one last picture. Because I just love to show off my beautiful girl
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