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EMMA'S MOMMY 10

[10, Emma's Mommy]

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Emma's Mommy 10

September 2010
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WALKING ALONG

May 26, 2010 09:58pm (EST)

Well I know its been a while so I’m not sure where to start. Emma is doing well she is beautiful and very spunky. She had another bronchoscopy about a month ago and was well. She still has small cysts that continue to reoccur in her airway, so until they stop growing there she will continue to have to go through bronchoscopies. She is back on the list for receiving services for the Regional Center. She is behind in her speech and so they send a teacher to work with her once a week for an hour. She totally understands everything, but she won’t say much. She says about 6 words. We are all learning to sign, so that she can express what she wants. When we go to her pediatrician again I am going to request that Emma see a pediatric speech therapist.
Emma has also been sent to see a nutritionist because she does not gain weight easily. She currently weighs about 20 lbs. She should be at least more than 25 lbs. She is a very petite girl. She also only eats soft food. Certain things she cannot swallow. Like if we give her pieces of meat she’ll just roll them around and eventually we have to take them out of her mouth. So needless to say she still has some small issues to work through.
Now, walking is a funny thing. She will not walk without us holding her hand. We’ve used objects like sticks and towels to help her walk. My husband was walking with her at the park and instead of holding her hand he holds the stick and Emma holds the other end of the stick. My husband at some point let go of the stick without Emma noticing. She walked by herself with the stick at hand for a couple of steps without noticing that my husband had let go. SHE WALKED JUST FINE. Once she saw that no one was on the other end of the stick she dropped to the ground. So we know she can walk but she is not ready to do it alone. We don’t want to push her to go solo. When she is ready she will do it on her own.
She also loves to be outside and loves flowers and she helps me water the plants everyday. She is a nature girl. She loves all kinds of music and is moving to beat of the music. It’s so cute to see her dance. She loves other children and she is super friendly. Its nice to be able to be out and about . For so long we were confined to our home that it is nice to be able to go to different places and expose her to new things.
She has also started with temper tantrums. Everyone spoils her rotten, so when we are home alone she wants us to cater to her and we don’t. We love her so much that we don’t want to spoil her so that she thinks that she is the one in charge. Anyway that is a work in progress.
I’m gearing up for the end of the school year. I get to hang with my honey and my girl for about six weeks in the summer, so I am so excited for that. My honey is still home with our girl and they are doing great. Apparently she doesn’t throw that many tantrums with just dad, it’s when mom gets home that she throws more. So were working on it. Anyway we are all well and we thank everyone who continues to keep our family in their prayers.

Almost forgot. She also got her ears pierced. Thanks to Michelle and Kris (her NICU mommies) and Monica for coming with me to get little miss Emmas earrings. It was a task. She cried and threw up all over everyone there. FUN!


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PICTURES

Mar 25, 2010 05:49pm (EST)

For some reason I had trouble with pictures. I'm trying again.


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STILL 19 LBS

Mar 23, 2010 08:59pm (EST)

Well Emma continues to be the apple of our eyes. She recently had her appointment with the pediatric pulmonologist and she said that Emma’s lungs sound very good. She is reducing the amount of breathing treatments from 2x a day to 1x a day. She doesn’t take any other meds, except albuterol as needed. She did mention that she wants Emma to start gaining weight. She is currently 19.3 lbs. She doesn’t gain easily, but she is 29 and ¼ in tall. She is very petit, yet tall. She is a very finicky eater. I feel she has some sort of texture aversion when it comes to food. She recently has been willing to try new foods and textures, so that is something we need to continue working with her. She is walking around furniture, but won’t let go unless we hold her hands. I think shell walk on her own soon. She recently started wearing shoes, so she’s learning to leave them on. She took them off a lot in the beginning, but I think she is getting used to them. When she walks we noticed that she would drag her left foot a bit and then take her step, so the physical therapist gave us some exercises for her to do to improve her walk. She doesn’t drag that much anymore, but we continue to work with her. The Regional Center also recently came out and did an assessment on Emma. They said cognitively she is where she should be at 12 months adjusted. However, she is behind in her language. They are starting her up with a teacher once a week to work with her speech and she is being referred for and evaluation by an occupational therapist. The nurse who came to do the evaluation said that because of how her palette is formed, that might have something to do with speech, but we’ll see what the specialist says. She does sign some words and I’m trying to teach her to sign so that she can communicate with us, so I’m not too worried yet. I know she understand everything we tell her. To me she is the smartest girl in the world. Anolther thing she is doing is waking up at about 3:30am every night and playing or staying awake until 4:30 am. I don't know if it was the time change or what, but I hope she goes back to her regular pattern soon.
We’ve also been getting out a bit more. Emma loves to be outside and she loves people. We are still careful about people who are sick and we try to be careful. We recently took Emma to Chuckie Cheese’s for the first time, and she loved it. We did wipe things down with wipes before she sat in anything and we did keep her away from this child who looked very ill. I don’t’ understand how people can take their SICK kids to such a public place an expose other children. Makes me crazy. Anyway we stayed away and Emma was ok. She got her first official balloon and she loved it. Overall Emma is doing very well. She does have an upcoming bronchoscopy/possible larynoscopy coming up. The ENT needs to make sure that she doesn’t continue to get subglottic cysts in her airway, so that should be happening next month some time. We are excited about Easter and the summer coming up. I would like her to take swimming lessons or some type of class where she can socialize with other kids. She loves kids very much, or people in general. She is a social butterfly. Anyway that is the update. Thank you to all who continue to keep Emma in your thoughts and prayers.
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SLOWLY GROWING

Feb 21, 2010 09:13pm (EST)

Well, its been a while since I posted. Not much different. Emma is doing well. She is 15 months old ( 12 months corrected). She is saying only a few words, but she sure knows more than she speaks. She is almost 30 inches tall and she weighs 19 lbs. For some reason she has been at 19 lbs for a long time. She does not gain weight. Pediatrician doesn’t seem to be worried, but I’d like to see her gain some. She has become a very picky eater. She has regular milk twice a day, sometimes three and she eats three small meals a day with snacks. If she likes the food being offered she’ll eat the whole thing, but if she doesn’t then it’s a few spoonfuls. So anyway it’s a battle to get her to eat. I’m not sure if I need to start worrying about her speech, but the pediatrician says not yet. So I won’t . She is walking around furniture and takes a few steps, but she won’t let go yet. She is still a little afraid, but she’ll get there. She is getting taller, because she outgrew her old infant care seat. We had to go out and get her a new one. So she is growing, but not gaining.
Other than that she is well and still being feisty and more and more rambunctious.
On a personal note my husband and I have decided that since we can’t have anymore children, we are looking into adoptions. ( Well not that I can’t have anymore children, but the possibility of having a preemie is more than 80% , and I’m not willing to take that chance) We actually have our orientation appointment this upcoming Friday. I’m excited and nervous and looking forward to this new and exciting chapter in our life. Emma loves children and I really don’t want her to be an only child. So were looking into it, to see if adoption is right for us. I’ll keep you all posted.
Anyway that’s about it for now. Nothing else major going on. Thanks to everyone who continues to keep Emma and our family in their prayers and well wishes.


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Posted by Emma's Mommy 10 | Comments: (6) | Permalink
NEEDS TO GROW

Jan 26, 2010 09:39pm (EST)

Well, its been a while. Emma is growing slow and steadily, but she is not gaining weight easily. Last time we weighed her she was still 19 lbs. The good news is that she is now drinking whole milk, so that should help her gain. She transitioned beautifully from formula to whole milk. She loves it. She actually wants it all the time, but we try to only give it to her in the morning and in the afternoon and once during the day after lunch. She eats food and has her favorites. The only issue she has had is that with these new changes she become constipated. That has been hard to deal with. We started to give her a lot of prune, sweet potatoe and yogurt along with a teaspoon of flax seed oil. We also give her prune juice, and that seems to help.
Other than that she is beautiful and spunky. She's throwing kisses and talking up a storm. We can't understand what she is saying, but she sounds cute. She loves chocolate, (of course, shes a girl) and she stands everywhere, but wont take a step by herself. She is still afraid. She also has so much hair, it looks like a wig.
We are also getting prepared for her baptism sometime this summer. She still has her doctors appointments here and there, but we are slowly strolling along.
Thanks to everyone for your continued prayers and well wishes for our sweet Emma.


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REFLECTION OF 2009

Jan 03, 2010 11:49am (EST)

Well I want to start of by wishing everyone a Happy New Year. This year has been one of many ups and downs for me and my family and one with many worries and joys. As I read through the other blogs of families who are going through many of the things we have gone through…..loss of our first born Ruben 2002 and Emma’s NICU journey in 2008/2009, I marvel at how we got through each one of those journeys. I become saddened to know that many families are going through the holidays with the pain of losing a child and having to put of a happy face for family and friends while all you want to do is curl up and hide. I know your pain. I also know the feeling of having our child in the NICU for 98 days, and the pain of having to leave her every night, while we get some much needed rest (which feels selfish to take). I know the pain of spending the holidays with our daughter in the NICU. Although many of the NICU staff become like extended family to us, we would have rather had our daughter home with us instead. This year we have been very fortunate to have Emma home with us. We feel blessed and fortunate to have our miracle child here. To us, Emma is our little miracle.
To all of the families who are having a rough time with the holiday season, I wish their was something magical that I could say to you to make it better, but their isn’t. Just know that many of us have gone through it and we (I) always have an ear to lend and a kind word to share, like many of you have shared with me over this last year. Thank You.

As an update on Emma, well she is well. She did get a slight bug a few days ago. Two days of a fever with a lot of nose discharge (boogies), but she is well now. She also had a bug in her tummy that made her bowls loose, but she is better now. She is crawling everywhere and she is getting braver and braver when it comes to standing in different places. She was evaluated by the Regional Center and she is doing well overall except her speech. Apparently she should be saying bi-syllabic words, but she isn’t. I know she understands everything, but her speech seems to be her only delay. In the last few days we have heard a lot more babbling and I’m hoping the speech comes soon. At her last meeting with the pulmonologist she mentioned that she wanted Emma to gain some weight, but it’s easier said that done. She does not gain weight fast. So I’m not sure what to do with that. Her pediatrician is not worried, but it’s in the back of my mind. She is currently in the 10th percentile and I guess they want her to be in the 50th percentile, so it’s something I need to work on. She continues to get her monthly dose of Synagis and she is up to date with all her shots. Her eye doctor said that she is doing really well with her glasses. She is using her right eye more than the left, so patching might be needed in the future. So we’ll have to see.
Now the Ferber method. Well our sweet Emma is in the habit of sleeping in her crib until about 3am when she wakes up and then wants to come to our bed. The time kept creeping up on us. It started at 3am, 12 am, and now we just put her down and she won’t stay in her crib. So let’s just say she ends up on our bed a lot earlier than we would like. So we decided to try this Ferber method. Let her cry for 5 minutes, then go in to soothe her, then leave and return in 10 minutes, then leave again and return in 15 minutes. Well after about the second round, she cried so much she threw up all over her crib and well, let’s just say she is back on our bed. So we are in search of a better method that would help our kangaroo addicted child. Any advice would be appreciated.

And finally my honey and I decided to have some child free time the other day. My sister was very gracious to offer to watch Emma while we went to the casino for a few hours. Well, this separation anxiety is very serious. My sister and her husband spent the entire four hours that we were gone, trying to keep Emma from crying her eyes out. She cried the majority of the time and was searching for her mommy and daddy. It was nice to be out, but all we could think about was our sweet Emma. When we got back she gave us the pout and her “I can’t believe you left me cry” and then was all smiles again. It was priceless. Thank you Alma and Chuy for entertaining our Emma. She surely kept them on their toes.

To our family and friends thank you for being understanding and for respecting our wishes when it came to visits and outings. Our sweet girl is well because of your prayers and your well wishes. We were supposed to keep it on the down low this holiday season, but we didn’t. We ventured out many times and our sweet Emma did well. We are still cautious and we still are worried, but we wanted her to have the experience of being with our family who also loves her very much. I wish everyone a great new year, and I hope this year brings us all peace and love.


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TRYING TO STAY HEALTHY

Dec 18, 2009 10:45am (EST)

Well, our sweet Emma is doing well. I am the one who currently has a cold and I'm trying very hard to expose Emma to my cold. I wear a mask all the time while I'm around her and last night I slept in the guest room because I cough too much and she wakes up every time I cough. Emma is up to date with all her shots and she is doing well. She continues to crawl all over the place and slowly you see her trying to stand, but then wabbles and falls. She is getting more and more brave when it comes to standing and she does stand longer and longer each day. She is truly a smart cookie, because she knows which areas of the house are off limits. Our media niche is one of them. Even though the tv is strapped to the wall, that is one area we have made off limits to her. So she'll crawl very fast to the area, and then stops and turns around to see if anyone is coming to stop her. She is totally a smart cookie. However, health wise she is good and I hope I don't get her sick. My fear is always that shell get very sick again and need o2 again. So I am being very careful. Anyway I am off for three weeks for Christmas break and I look forward to spend the entire time with my husband and daughter. I'm attaching some photos of Emma, and the day we tried to do her Christmas greeting card. My husband and I wish all of you a great Holiday Season. After we experienced our loss we began to look at things very differently within our family unit, so we are very thankful that we have our sweet Emma with us and we plan to cherish every moment. Thank you to all for your continued love and support during our hibernation period.


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SLOW AND STEADY

Dec 05, 2009 11:22am (EST)

Well, I haven't posted for a while. I've has some trouble with the website, but I hope that has been corrected. Well, we are gearing up for Christmas. I am very excited that our sweet Emma will be home for her 2nd Christmas. Her first Christmas we spent in the NICU, so this is a special Christmas for us.
  Well our sweet Emma is crawling up a storm. She is all over the house. She has her two front lower teeth and looks cute. She is getting her Synagis monthly, she got her regular flu shot and her H1N1 flu shot as well. She has her bronschoscopy last week and they did find more cysts in her airway, but they were not as big as the last time and they were not causing any respiratory distress. The pulmonologist said her lungs have healed well from the pneumonia and she still wants her on the pulmicort breathing treatments. The pulmonologist also wants Emma to gain some weight, but her pediatrician says no that Emma is fine with her weights, so go figure. Emma currently weighs about 18.5 lbs and he measures almost 28 inches. She is beautiful and spunky and we feel so very blessed.
We are getting ready to take Christmas pictures here at home and we hope that goes smooth.
Anyway all is well and we hope that things stay that way. We are keeping it on a down low this Christmas, here at home.
Anyway thank you to everyone who continues to send prayers and well wishes to our sweet girl.


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FIRST HAIR CUT

Nov 21, 2009 09:20pm (EST)

Well today Emma received her first hair cut. Her Auntie Xochitl was kind enough to give her her very first hair cut. She actually did really well. She sat through it all without letting out a peep. ( Well she also had her pacifier in her mouth, but if she would have made a fuss we would have heard her) She sat through the entire cut pretty much just exploring what was happening around her. In the end she looks really cute. She has so much hair and it was all very uneven. So her Auntie fixed it so that it was even.
Emma is also now finally getting her two front lower teeth. They are breaking through the gums. They look so cute. She is also crawling, but she currently goes in circles and she goes backwards. I know within the next couple of days she finally figure out how to go forwards. Developmentally she is doing well. A little off here and there with some months and what she should be doing, but although she is a year old, I have to remember that technically she really is almost nine months old (developmentally that is). My sweet girl is moving at her own pace and I know she'll be walking soon, cuz she does not like to be sitting down. I also hope the speaking part comes soon. I think that is the one thing that is taking the longest.
Anyway just a quick update. Thanks to everyone for your continued prayers and well wishes.


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Posted by Emma's Mommy 10 | Comments: (1) | Permalink
GOOD DAY

Nov 20, 2009 02:29pm (EST)

Well Emma had her Bronchoscopy done this morning. They did find some subglottic cysts in her airway, but they were small and she had them all removed. I'm glad they found them small before they became huge and caused her breathing problems. We went in early about 6 am and she actually did very well. She became an instant friend of her nurses. While we were waiting the nurses kept coming around to see her and one nurse in particular was giving her the tour of the surgery center we were at. She loves attention! Anyway the doctor said that she will need another bronch done in about four months, so here I go again with the insurance. I hope they don't give me a hard time.
Anyway we are gearing up for the holidays. We will be renting a lot of movies and hanging around at home. We don't want to expose her to all the germs out there, so we will be limited on outings. Not complete seclusion, but somewhat limited. I am excited about Christmas this year. Last year Emma was in the NICU and it was very hard for me to enjoy Christmas without her here at home. So I'm looking forward to it this year.
I'm off for the next week, so I will be enjoying my family.
Well thats pretty much it for now. I hope everyone enjoys a wonderful Thanksgiving Feast. Thank you to all for your prayers and well wishes.

I've included some pictures of Emma home from the surgery center. We tried to put her down for a nap because the doctor said she might be cranky, but that didn't work. So we all put on our jammies and we are just relaxing at home.


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