Madison did great with her surgery. The doctors were very surprised with how well she did & we ended up getting to go home after 2 nights! For about a week she would only drink milk & she lost about a pound, but she's been eating really good since then.
We have lots of doctor's appointments coming up in the next few months:
*Gastroenterologist next week - we haven't seen this doctor before, but Madison's ENT referred us because of her acid reflux
*Another appointment with Madison's new pediatrician, Dr. White in August - we changed to Dr. White because she will go to Vanderbilt if Madison is admitted. Her previous doctor did not go to the hospital. Given all of Madison's issues she has had, we felt more comfortable with someone who would go. We had our first visit with her last week, and I really liked her! She has her hands full with Madison!
*Also in August, Madison will have another swallow study to make sure she's not silently aspirating because she hasn't had a clear chest x-ray since she's been born. She will also have a follow up with pulmonology & ENT. Hopefully they will have her next sleep study set up for early October.
*Early September she has to have a hearing test done at Vanderbilt.
*Then in September / October she will be seeing her kidney doctor & geneticist again.
Lots to do!!
On a follow up to an earlier post, Madison has been doing so good with her therapist that comes to the house once a week. She finally started crawling on her hands & knees instead of "army crawling" on her stomach. She's so active now & is pulling up all the time. She loves to stand up in her play pen, crib, or on the couch and walk around. We're hoping to get her walking by the end of August because she's flower girl in a wedding, but still have some work to do on that.
She is saying four words that we can understand: mama, dada, baba (for her cup), and bye bye. I love hearing her sweet voice!
She is doing a lot better on her eating too. She will feed herself a few things with her hands, and today she fed herself some of her lunch with a fork!
She continues to make progress all the time, and I love watching her learn how to do new things!
Thursday, July 18, 2013
Saturday, June 22, 2013
Focus on what could go right
As most of you know, Madison is having surgery Monday morning. This has been planned for about a month, and it has been torture waiting for it to get here. This week especially has been rough. It doesn't help that I have been watching Grey's Anatomy reruns & bawling my eyes out at something almost every episode.
This week there was an episode that came on that pretty much made me lose it. A girl went in for a routine surgery, and never woke up. Add one more thing to my worry list for Monday... I cried for about an hour & a half, and then just went in Madison's room and watched her sleep like a crazy person haha.
While I was crying my eyes out, a few things kept running through my head...
-What if her vocal chords close up again during this surgery & she has trouble breathing again?
-What if they can't do a breathing tube if it's needed & have to do a tracheostomy?
-What if she comes out of surgery fine, but then they find something in her brain MRI when we get the results back?
-What if when they do the bronchoscopy (airway evaluation), they find something in her lungs? (she has had spots show up in several chest x-rays)
I saw something that made me stop & think tonight...
"Stop being afraid of what could go wrong, and focus on what could go right."
Slap in the face...
What if the surgery goes fine & she does great in recovery?
I've been focusing so much on what could go wrong & negative outcomes instead of praying & hoping for a good outcome. Instead of hoping for the best, I've been expecting the worst. As you are praying for Madison's surgery, I would also ask that you pray that Jake & I have the right attitude about this situation. We need to stay positive & focus on the things that go right instead of what could go wrong.
This week there was an episode that came on that pretty much made me lose it. A girl went in for a routine surgery, and never woke up. Add one more thing to my worry list for Monday... I cried for about an hour & a half, and then just went in Madison's room and watched her sleep like a crazy person haha.
While I was crying my eyes out, a few things kept running through my head...
-What if her vocal chords close up again during this surgery & she has trouble breathing again?
-What if they can't do a breathing tube if it's needed & have to do a tracheostomy?
-What if she comes out of surgery fine, but then they find something in her brain MRI when we get the results back?
-What if when they do the bronchoscopy (airway evaluation), they find something in her lungs? (she has had spots show up in several chest x-rays)
I saw something that made me stop & think tonight...
"Stop being afraid of what could go wrong, and focus on what could go right."
Slap in the face...
What if the surgery goes fine & she does great in recovery?
I've been focusing so much on what could go wrong & negative outcomes instead of praying & hoping for a good outcome. Instead of hoping for the best, I've been expecting the worst. As you are praying for Madison's surgery, I would also ask that you pray that Jake & I have the right attitude about this situation. We need to stay positive & focus on the things that go right instead of what could go wrong.
Wednesday, June 19, 2013
Madison's "Shabby Chic" 1st Birthday
Madison had her 1st birthday party yesterday. Those that know me know that I love to plan pretty much anything. So I've been planning her party since the beginning of the year. After finishing up decorating yesterday, I felt a little silly for how much work was put into it since she won't remember it anyways, but I wanted her to have a special 1st birthday. There were a few times this year that I wasn't sure if she would make it to her first birthday. Hopefully she can look back at pictures & video and be able to appreciate it.
I guess if there was a theme for Madison's party, it was "shabby chic." Since she's not really old enough to tell me what kind of party she wants, I got a lot of inspiration from Pinterest. I made a lot of the decorations, and had so much fun doing it!
I guess if there was a theme for Madison's party, it was "shabby chic." Since she's not really old enough to tell me what kind of party she wants, I got a lot of inspiration from Pinterest. I made a lot of the decorations, and had so much fun doing it!
Dessert table
Madison's smash cake
Madison's high chair
Food table
Gift table
Centerpieces
0-12 month picture banner
My mom helped me make some of the decorations, and without her help & Jake's mom's help I wouldn't have been able to get everything set up. I also have some amazing family members who helped me with the food. I was so happy with how everything turned out! Madison is so loved, and she is such a blessed little girl!!
Here are just a few other pictures from the party...
Friday, June 14, 2013
Nurses for Newborns & Tennessee Early Intervention Services
When Madison was in the NICU at Baptist, they told us about a program called Nurses for Newborns that we could use since she came home with an NG tube & had other issues. At first I wasn't 100% comfortable with the idea, but it has been a blessing.
Madison's nurse, Tina, comes once a month to check on her. She checks on how Madison has been doing, helps answer questions, gives advice, and just is a good resource that I have had over this past year.
Another thing that Tina does when she comes is go through a list of things Madison should be doing for her age. There were a couple of months where Madison was a little below where she should be (mostly in communication & gross motor skills). So Tina put in a referral to Tennessee Early Intervention Services (TEIS) to come do an evaluation.
When TEIS did their evaluation of Madison she showed a 25% delay in communication. With another medical condition she has, this qualified her for services. The amazing thing is we are not out any money for these services. Whatever insurance doesn't cover, TEIS does. This is definitely something the state of Tennessee is doing right, and I am so thankful we are able to take advantage of this additional resource.
Madison's therapist, Nicole, came this morning. Madison did great! I think that Nicole is going to be so great for Madison. She got her to eat a graham cracker by herself after only a few tries - something I haven't been able to do. It may seem like something little, but I was so excited! Even after Nicole left she picked up a cracker & started chewing on it without me trying to get her to. She also showed me different exercises / activities I can work with Madison on.
We knew from the beginning that Madison may need some extra help, so I have been open to any resources we have been able to use. I know that sometimes parents don't want to accept that their child may need some extra help, in whatever area it may be. But I would encourage anyone that has some concerns about their toddler being behind or delayed to talk to your pediatrician. They can also request TEIS evaluations, or may have other suggestions. Never be afraid to ask for help because that is what these programs are in place for.
Madison's nurse, Tina, comes once a month to check on her. She checks on how Madison has been doing, helps answer questions, gives advice, and just is a good resource that I have had over this past year.
Another thing that Tina does when she comes is go through a list of things Madison should be doing for her age. There were a couple of months where Madison was a little below where she should be (mostly in communication & gross motor skills). So Tina put in a referral to Tennessee Early Intervention Services (TEIS) to come do an evaluation.
When TEIS did their evaluation of Madison she showed a 25% delay in communication. With another medical condition she has, this qualified her for services. The amazing thing is we are not out any money for these services. Whatever insurance doesn't cover, TEIS does. This is definitely something the state of Tennessee is doing right, and I am so thankful we are able to take advantage of this additional resource.
Madison's therapist, Nicole, came this morning. Madison did great! I think that Nicole is going to be so great for Madison. She got her to eat a graham cracker by herself after only a few tries - something I haven't been able to do. It may seem like something little, but I was so excited! Even after Nicole left she picked up a cracker & started chewing on it without me trying to get her to. She also showed me different exercises / activities I can work with Madison on.
We knew from the beginning that Madison may need some extra help, so I have been open to any resources we have been able to use. I know that sometimes parents don't want to accept that their child may need some extra help, in whatever area it may be. But I would encourage anyone that has some concerns about their toddler being behind or delayed to talk to your pediatrician. They can also request TEIS evaluations, or may have other suggestions. Never be afraid to ask for help because that is what these programs are in place for.
Sunday, June 9, 2013
Lots to do!
The next few weeks are going to be super busy! This week I'm finishing up getting everything together for Madison's first birthday party, we have Madison's one year pictures, and Jake & I are celebrating our 4th wedding anniversary.
Then the next week is Madison's big day! I can't believe how much time, money, and effort I have put into this party, but I am so excited!! I know she won't remember it, but I wanted it to be special for her. Something else that Jake & I are doing each year on her birthday is writing her a letter. On her 18th birthday, we'll give her all the letters we have written over the years. :)
Then on June 24th, Madison is having surgery. We still haven't found out the results from the blood work she had done a couple of weeks ago (testing for the central sleep apnea gene), but hopefully we will hear something this week. When we go bright & early on the 24th to Vanderbilt, she'll be having a brain MRI & airway evaluation first. Then as long as they don't see anything unexpected during the evaluation, they will take out her tonsils & adenoids. Last they will open up the right side of her nose where she has a really narrow nasal passage.
Her ENT told us to expect to stay in the hospital 1-2 weeks. But if she does really well after a few nights we may be able to go home. It all depends on how she's doing with her breathing & oxygen needs. They did tell us that she will more than likely have to stay in the ICU after surgery & she may have a breathing tube until they feel comfortable she will breathe ok on her own. We are praying that things will go smoothly for her. It's so scary knowing she's going to have surgery after what happened when she was put to sleep for her ear tubes. But they feel confident that she had such a hard time last time because she had RSV & we didn't know it.
Lots going on over the next couple of weeks!!
Then the next week is Madison's big day! I can't believe how much time, money, and effort I have put into this party, but I am so excited!! I know she won't remember it, but I wanted it to be special for her. Something else that Jake & I are doing each year on her birthday is writing her a letter. On her 18th birthday, we'll give her all the letters we have written over the years. :)
Then on June 24th, Madison is having surgery. We still haven't found out the results from the blood work she had done a couple of weeks ago (testing for the central sleep apnea gene), but hopefully we will hear something this week. When we go bright & early on the 24th to Vanderbilt, she'll be having a brain MRI & airway evaluation first. Then as long as they don't see anything unexpected during the evaluation, they will take out her tonsils & adenoids. Last they will open up the right side of her nose where she has a really narrow nasal passage.
Her ENT told us to expect to stay in the hospital 1-2 weeks. But if she does really well after a few nights we may be able to go home. It all depends on how she's doing with her breathing & oxygen needs. They did tell us that she will more than likely have to stay in the ICU after surgery & she may have a breathing tube until they feel comfortable she will breathe ok on her own. We are praying that things will go smoothly for her. It's so scary knowing she's going to have surgery after what happened when she was put to sleep for her ear tubes. But they feel confident that she had such a hard time last time because she had RSV & we didn't know it.
Lots going on over the next couple of weeks!!
Thursday, May 16, 2013
Sometimes you just need to vent...
I like to think that I have a pretty positive outlook on things most of the time. With everything going on with Madison, I try to keep a positive attitude & just trust in God's plan. But there are days like today, where I am just beyond frustrated and tired.
Don't get me wrong, I love being home with Madison. I know that it is the best thing for her right now, and she has done really well since I've been home with her. I pulled her out of daycare to limit the exposure she would have to germs & sickness. For about the last month though, she has been sick with a cold. For the normal child, a cold isn't a big deal. But for Madison, it means getting choked on her drainage and throwing up... a lot & often. So just to vent, if you are sick or have been around anyone that is sick (even a runny nose) - please don't get close to Madison. We have tried so hard to keep her well because she has enough issues going on without being sick on top of it.
Yesterday, she threw up in her car seat on the way to her ENT appointment at Vanderbilt. We had to pull over and change clothes & wipe down the car seat. Today, our rug has gotten thrown up not once, but twice. Oh, and she has thrown up in her crib. If you don't have a child with severe acid reflux, you have no idea how lucky you are. It makes me so frustrated that there are times she can't keep her food / milk down. Then I get upset with her... and that makes things worse. I feel so bad for getting mad at her because she is just a baby. She has no control over it, and I know she doesn't enjoy it either.
Hopefully tomorrow will be better, and I will get over having a pity party for myself. But like I said, sometimes you just need to vent.
Don't get me wrong, I love being home with Madison. I know that it is the best thing for her right now, and she has done really well since I've been home with her. I pulled her out of daycare to limit the exposure she would have to germs & sickness. For about the last month though, she has been sick with a cold. For the normal child, a cold isn't a big deal. But for Madison, it means getting choked on her drainage and throwing up... a lot & often. So just to vent, if you are sick or have been around anyone that is sick (even a runny nose) - please don't get close to Madison. We have tried so hard to keep her well because she has enough issues going on without being sick on top of it.
Yesterday, she threw up in her car seat on the way to her ENT appointment at Vanderbilt. We had to pull over and change clothes & wipe down the car seat. Today, our rug has gotten thrown up not once, but twice. Oh, and she has thrown up in her crib. If you don't have a child with severe acid reflux, you have no idea how lucky you are. It makes me so frustrated that there are times she can't keep her food / milk down. Then I get upset with her... and that makes things worse. I feel so bad for getting mad at her because she is just a baby. She has no control over it, and I know she doesn't enjoy it either.
Hopefully tomorrow will be better, and I will get over having a pity party for myself. But like I said, sometimes you just need to vent.
Sunday, May 12, 2013
Madison's Birth Story
Today is my first Mother's Day! I'm so very blessed to be able to be Madison's mommy. She is the cutest, sweetest little girl & I love her so much more than I ever thought was possible.
So I decided that instead of writing about today, I would write about how I became a mother...
I had planned out in my head how things would go for my labor / delivery. I would go in to be induced, get an epidural before I was in a lot of pain, and the next day have a healthy baby girl. All my family would get to come in to see her & take pictures. I should know by now things usually don't go as planned.
I went in to be induced at Baptist on Sunday, 6/17/12 (Father's Day) at 8:00pm. They started the medicine to induce labor not long after I got settled in. I had been in the room maybe 10 minutes when Madison's heart rate declined. A lot of nurses came in, repositioned me, put oxygen on me, and her heart rate went back up.
A couple of hours in, I started having some stronger contractions (even thought I never really felt them). Madison's heart rate declined again. The nurse called Dr. Bellardo & let him know what had been going on. At that point, they told me they wanted to go ahead and get the epidural in place in case they needed to access it quickly since Madison's heart rate has declined twice already with contractions.
Not long after they got the epidural in place, her heart rate declined for a third time. So they decided they needed to go ahead and do a C-section. Within 20 minutes, I was in surgery & about to have a baby. I didn't even really have time to be nervous because everything was happening so fast. They told Jake to get the camera ready, and Madison was born at 3:32am on 6/18/12.
It was a good thing Dr. Bellardo went ahead and did a C-section. Madi's umbilical cord was wrapped around her neck (which is why her heart rate kept declining with contractions). Her nose was also smashed to one side from the way she was positioned inside me.
I remember after she was delivered listening for her to cry. After probably 30 seconds, I looked at Jake & said "she's not crying." His face just went white & we watched them rush her over to the incubator. Finally she started crying... the nurses got her measurements, and then let us take a picture before taking her to the NICU. She was 7lbs 3oz and 20.5 inches long with a head full of hair.
Jake went with her to the NICU, and after surgery I went back to our room. At 3:30 in the morning, we already had a waiting room full of people who wanted to meet Madison. I just remember wanting to be able to hold her and to know what was going on. Before noon that day, we finally got to see her before we went up to the regular room on the 7th floor. I still hadn't gotten to hold her yet.
While we were upstairs waiting to hear what was going on with Madison & when we would get to hold her, I just remember thinking that it didn't even feel like I had had a baby. It didn't seem real. Finally almost 24 hours after having her, I got to hold Madison.
She didn't get to go home from the NICU until 15 days later. Those 2 weeks were so physically & emotionally exhausting for us. But thankfully, she was able to go home. There were babies that had been in the NICU for months. I can't imagine how difficult that is for those parents who have endured that.
I have learned that you can't plan out everything in your life. Even though things didn't go as smoothly as I had hoped for, I was still a mother to the most amazing little girl. I'm so glad I was able to spend my first Mother's Day cuddling and loving on her!
So I decided that instead of writing about today, I would write about how I became a mother...
I had planned out in my head how things would go for my labor / delivery. I would go in to be induced, get an epidural before I was in a lot of pain, and the next day have a healthy baby girl. All my family would get to come in to see her & take pictures. I should know by now things usually don't go as planned.
I went in to be induced at Baptist on Sunday, 6/17/12 (Father's Day) at 8:00pm. They started the medicine to induce labor not long after I got settled in. I had been in the room maybe 10 minutes when Madison's heart rate declined. A lot of nurses came in, repositioned me, put oxygen on me, and her heart rate went back up.
A couple of hours in, I started having some stronger contractions (even thought I never really felt them). Madison's heart rate declined again. The nurse called Dr. Bellardo & let him know what had been going on. At that point, they told me they wanted to go ahead and get the epidural in place in case they needed to access it quickly since Madison's heart rate has declined twice already with contractions.
Not long after they got the epidural in place, her heart rate declined for a third time. So they decided they needed to go ahead and do a C-section. Within 20 minutes, I was in surgery & about to have a baby. I didn't even really have time to be nervous because everything was happening so fast. They told Jake to get the camera ready, and Madison was born at 3:32am on 6/18/12.
It was a good thing Dr. Bellardo went ahead and did a C-section. Madi's umbilical cord was wrapped around her neck (which is why her heart rate kept declining with contractions). Her nose was also smashed to one side from the way she was positioned inside me.
I remember after she was delivered listening for her to cry. After probably 30 seconds, I looked at Jake & said "she's not crying." His face just went white & we watched them rush her over to the incubator. Finally she started crying... the nurses got her measurements, and then let us take a picture before taking her to the NICU. She was 7lbs 3oz and 20.5 inches long with a head full of hair.
Jake went with her to the NICU, and after surgery I went back to our room. At 3:30 in the morning, we already had a waiting room full of people who wanted to meet Madison. I just remember wanting to be able to hold her and to know what was going on. Before noon that day, we finally got to see her before we went up to the regular room on the 7th floor. I still hadn't gotten to hold her yet.
While we were upstairs waiting to hear what was going on with Madison & when we would get to hold her, I just remember thinking that it didn't even feel like I had had a baby. It didn't seem real. Finally almost 24 hours after having her, I got to hold Madison.
She didn't get to go home from the NICU until 15 days later. Those 2 weeks were so physically & emotionally exhausting for us. But thankfully, she was able to go home. There were babies that had been in the NICU for months. I can't imagine how difficult that is for those parents who have endured that.
I have learned that you can't plan out everything in your life. Even though things didn't go as smoothly as I had hoped for, I was still a mother to the most amazing little girl. I'm so glad I was able to spend my first Mother's Day cuddling and loving on her!
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