Friday night about 11:00pm Ella started to become very fussy screaming, we couldnt calm her down all night. At 7am I checked her temp and she was at 102.1, I called her doctor and he was very concerned with her since there was no other symptoms. We spent the morning in the hospital running tests. Sometimes a fever can be linked to DWS, so they did tests to see if Ella might have a disease that is associated with DWS. 3 nurses and I held her down and put an IV in her scalp to draw blood and set up fluid. This was very odd to me, I have never seen a IV put in the scalp. According to the nurse this is used quite often in infants in the hospital, its easier to get a IV in the scalp than the arm or leg because of all the moving around a baby does. It was pretty hard on me to watch this and see Ella suffer the hurt of it. Bu I also knew it was for a good cause, so they could figure out what was going on. The doctor came in and talked to me, he said that everything came back normal. That he is unsure why she is running a fever. He said that she could be coming down with something, it just hasnt shown up in her yet. They decided to release her pending if her fever got high again. Ella's fever hasnt gone back to normal range all weekend. The lowest it has been is 99.6, which is a fever in a infant, just not a dangerous high. So far no other symptoms are still showing as of this morning. I have contacted the doctor and waiting for a call from him.
The concern I have is her PDA and her DWS what if this is something associated with one of those? Thank you for all the prayers that have been over flowing. Thank you to my Aunt LaRue for putting Ella's name in the temple, she has done this since Ella was born. We love you Aunt Larue, thank you for thinking of us and all your support. Also a HUGE thank you to my friend Jamie, she also has a prayer request in to SMCC, we have support from people we havent even met. Thank you to my parents and all other family and friends that have prayers and love for my beautiful girl. I just know with all the prayers and support we can make it through all of this bumps. Ella has a lot of love and support! I will update with any news.
Monday, October 29, 2012
Thursday, October 25, 2012
PDA
They did a lot of heart tests on her heart EKG, Ultrasound of the heart and many more. Come to find out Ella has a PDA
Patent ductus arteriosus
Patent ductus arteriosus (PDA) is a condition in which the ductus arteriosus does not close. (The word "patent" means open.)
The ductus arteriosus is a blood vessel that allows blood to go around the baby's lungs before birth. Soon after the infant is born and the lungs fill with air, the ductus arteriosus is no longer needed. It usually closes in a couple of days after birth.
PDA leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.
The doctor would like to see if it will close on its own in a month. But If Ella develops weight gain, or stops eating than we would need to get her in quick. If the PDA does not close on its own we will have to either take a catheter in and close it. If Ella is too small for a catheter than we will be forced to do open heart surgery.
Please keep your thoughts and prayers with Ella as well as our family as we fight this! The more prayers the better chance we have of fighting this! Many thanks and love to the support.
The ductus arteriosus is a blood vessel that allows blood to go around the baby's lungs before birth. Soon after the infant is born and the lungs fill with air, the ductus arteriosus is no longer needed. It usually closes in a couple of days after birth.
PDA leads to abnormal blood flow between the aorta and pulmonary artery, two major blood vessels that carry blood from the heart.
The doctor would like to see if it will close on its own in a month. But If Ella develops weight gain, or stops eating than we would need to get her in quick. If the PDA does not close on its own we will have to either take a catheter in and close it. If Ella is too small for a catheter than we will be forced to do open heart surgery.
Please keep your thoughts and prayers with Ella as well as our family as we fight this! The more prayers the better chance we have of fighting this! Many thanks and love to the support.
Saturday, October 20, 2012
update
I have been quite a slacker on updating the blog lately. Thought I better find sometime and get it updated.
Ella has shown some great signs of meeting her milestones. Tuesday the 16th of October we had taken our dog Oliver in to be seen at the Vet Emergency, he had a really hard day vomiting. As we were waiting to hear on his blood results. Matt came from in the waiting room into me waiting with Oliver and said Ella has started laughing. He said "watch" as Matt tickled her around her neck and chest she started giggling. It was so cute. It wasn't just once it was a lot of times.
Yesterday I tested her to see how alert she is, I walked from one end of the room to the next. Ella would follow me with her eyes and move her head as I walked around. She kept her eyes on me the whole time. Well not the whole time, while Brayden was trying to be involved she would also watch him.
Her hand motion has become great also. When she wants a binkie or bottle, instead of crying first she will put her fingers and fist in her mouth.
I have started to put her in her crib for about15 minutes while I try to get ready in the mornings. She loves her musical toys that go around in a circle above her head. She smiles so big at them and puts her hands up for them. She also holds things now, toy keys, rattles, her binkie. She takes them to her face, sometimes even accidentally smacks herself with them. OUCH!
Ella has been having a hard time keeping her head up, which does have me a little concerned. But I will talk to the Physical Therapist about that this week. She also has a wellness visit this Wed. So we will see how big shes getting.
As far as the neurosurgeon we dont need to see him for 6 months unless Ella shows signs of pressure in her brain. We also saw the orthopedic surgeon a few weeks ago and she said that Ella's hip is 100% developed now. We will see the ortho in 3 months to follow up with an xray to make sure that things are still progressing.
While Ella has shown a lot of improvement we still have a full year ahead of us. I have learned that I can not compare Ella and her meeting her milestones with normal 4 month olds. Children learn on there own terms and what one may be doing the other may not. Its been hard for me to realize that learning things is not going to happen overnight, its a process and sometimes it can be a very long process.
At 4 months I started feeding Brayden solids. But it was because he was sitting up on his own. Ella is doing none of this and I most likely wont start her till 6 months.
Please keep Ella in your prayers, we need prayers at all times. I really believe that all the prayers we receive for Ella is helping her succeed in things that I didnt know if she would or not.
Thank you for all your support and love. Its been quite a journey for all of us the last 4 months, but the journey makes us stronger. The strength in us will continue to grow as we go.
Ella has shown some great signs of meeting her milestones. Tuesday the 16th of October we had taken our dog Oliver in to be seen at the Vet Emergency, he had a really hard day vomiting. As we were waiting to hear on his blood results. Matt came from in the waiting room into me waiting with Oliver and said Ella has started laughing. He said "watch" as Matt tickled her around her neck and chest she started giggling. It was so cute. It wasn't just once it was a lot of times.
Yesterday I tested her to see how alert she is, I walked from one end of the room to the next. Ella would follow me with her eyes and move her head as I walked around. She kept her eyes on me the whole time. Well not the whole time, while Brayden was trying to be involved she would also watch him.
Her hand motion has become great also. When she wants a binkie or bottle, instead of crying first she will put her fingers and fist in her mouth.
I have started to put her in her crib for about15 minutes while I try to get ready in the mornings. She loves her musical toys that go around in a circle above her head. She smiles so big at them and puts her hands up for them. She also holds things now, toy keys, rattles, her binkie. She takes them to her face, sometimes even accidentally smacks herself with them. OUCH!
Ella has been having a hard time keeping her head up, which does have me a little concerned. But I will talk to the Physical Therapist about that this week. She also has a wellness visit this Wed. So we will see how big shes getting.
As far as the neurosurgeon we dont need to see him for 6 months unless Ella shows signs of pressure in her brain. We also saw the orthopedic surgeon a few weeks ago and she said that Ella's hip is 100% developed now. We will see the ortho in 3 months to follow up with an xray to make sure that things are still progressing.
While Ella has shown a lot of improvement we still have a full year ahead of us. I have learned that I can not compare Ella and her meeting her milestones with normal 4 month olds. Children learn on there own terms and what one may be doing the other may not. Its been hard for me to realize that learning things is not going to happen overnight, its a process and sometimes it can be a very long process.
At 4 months I started feeding Brayden solids. But it was because he was sitting up on his own. Ella is doing none of this and I most likely wont start her till 6 months.
Please keep Ella in your prayers, we need prayers at all times. I really believe that all the prayers we receive for Ella is helping her succeed in things that I didnt know if she would or not.
Thank you for all your support and love. Its been quite a journey for all of us the last 4 months, but the journey makes us stronger. The strength in us will continue to grow as we go.
Tuesday, October 2, 2012
Physical Therapy
Today we had Physical Therapy, we did more paper work than anything. We set up goals for the next 6 months to achieve. Because of Ella's low muscle tone, she is going to develop slower than I child with normal muscle tone. Which part of me feels really bad, but I also know if we keep on things that she will be okay. We are going to work on making her neck stronger so hold her head up and rolling on her left side. Right now Ella is favoring the right side, she rolls over on it when I am changing her diaper and just laying there. She needs to be rolling on both sides equally. We are going to also work on her holding things, rattle ect. So far she holds things, but she lets go after a few minutes. I am so proud of Ella and the strength she has. Sometimes she gives up and lets her head go to her chest, but I watch her closely and can see that she really wants to try. Early intervention has been such a blessing. I have had parents tell me that early intervention was never told to them and now there children are way behind on developing.
We have our appointment Oct 8th with the orthopedic surgeon to go over her hip. If she ends up in a brace its going to delay things a little bit with her developing. But once the brace is off, we will get back in gear to get her back on track.
Ella was diagnosed a few weeks ago with Thrush, we were able to cure it with a medication from the doctor. But we woke up this morning and its back in full force. So the doctor has called in another medication to hopefully take it away forever. Keeping our fingers crossed.
As far as Ella's acid reflex shes doing great. The doctor put her on Zantac and Previcid and since we started she hasnt cried or arched her back. So hopefully these medications will continue to work and not cause pain.
We have been working on Ella crying in her car seat while in the car. She has done a little better with keeping her acid reflex under control but its still really bad. So we had a suggestion today to swaddle her in the car seat. So we will try that next and see if we have any progress. Any suggestions would be great?
Thanks to all that reads our updates, we appreciate all the support and love for our beautiful girl!
We have our appointment Oct 8th with the orthopedic surgeon to go over her hip. If she ends up in a brace its going to delay things a little bit with her developing. But once the brace is off, we will get back in gear to get her back on track.
Ella was diagnosed a few weeks ago with Thrush, we were able to cure it with a medication from the doctor. But we woke up this morning and its back in full force. So the doctor has called in another medication to hopefully take it away forever. Keeping our fingers crossed.
As far as Ella's acid reflex shes doing great. The doctor put her on Zantac and Previcid and since we started she hasnt cried or arched her back. So hopefully these medications will continue to work and not cause pain.
We have been working on Ella crying in her car seat while in the car. She has done a little better with keeping her acid reflex under control but its still really bad. So we had a suggestion today to swaddle her in the car seat. So we will try that next and see if we have any progress. Any suggestions would be great?
Thanks to all that reads our updates, we appreciate all the support and love for our beautiful girl!
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