(Amazing!) Sleep Study Follow Up

We went today to see Madison's ENT & Pulmonologist to discuss her sleep study results in further detail & next steps.

They were so happy with how the sleep study went. She had such an amazing improvement (they said the best they had ever seen)!! All of the many prayers for Madison definitely were heard & answered! Unless we see she is having issues again, she won't even have to have another sleep study done. They also think that as long as she does well through the winter, we will be done with the oxygen monitor in the Spring (she hasn't had to have her oxygen in ALMOST 4 WEEKS)!!

Just a side note:  thinking about not having her hooked up to the oxygen monitor is almost enough to send me into a panic attack. Prayers would be appreciated for this adjustment as we get used to her actually sleeping & breathing well.

She will be having surgery soon (date pending), but nothing else needs to be done to help her sleeping at this point. The next time they put her under, here is what she is having done...
-Tongue clipped (she is tongue tied)
-Sedated hearing test & cleaning out her ear tubes (they also will replace the tubes if needed because they keep getting clogged up)
-Looking at her vocal chords / airway again with a camera to make sure they haven't missed anything
-Getting her tear duct in her eye unclogged

She will likely be under for 1-2 hours, but shouldn't have to stay in the hospital if she does really well during surgery / coming out of sedation. (If she has any issues during surgery with her breathing or airway, she could stay overnight at least).

We are so thrilled with the great news we have received about the sleep study & are so thankful for God's healing hand over Madison!

Happy Thanksgiving!

I think that you should be thankful every day, but I do love Thanksgiving! I love getting to spend time with family, eat, and just enjoy being together. There are so many things that I am thankful for... this year has been full of ups & downs, but God has been so very present through it all.

First, I am thankful for my salvation; for being loved by a forgiving & merciful God. There were times this year that I questioned why things were happening, but His presence was always near. His love & grace are more than I deserve, but I'm so thankful He loves me unconditionally.

I'm also thankful for my wonderful husband, Jake. He works hard so I can stay home with Madison. I don't have 3 meals cooked a day, and the house isn't always clean, but he never complains. There are times after being home with Madi all day I need some "me" time. Even though he has worked all day & is tired too, I never hear him complain when I take time to go to the gym or get out of the house. He is such an amazing father to Madison, and she loves her "dada" so much!

One of my greatest blessings is Madison... she has brought so much joy to our lives. I love watching her learn & discover new things. Just in a week or two she has learned to climb on furniture (and get down), open doors that we have shut, stand up by herself in the middle of the floor (which it seems like we have been working on forever), and say "Whoa" (which cracks me up, especially when she pulls a toy out or sees something she likes). I love going to get her up in the mornings from her crib. I'll turn the light on & she will usually sit up really quick with the biggest grin on her face. She is definitely a sweet, loving child in the mornings.

I'm also so thankful for the improvements we have seen in her health the past year. We have had some new bumps in the road come up (like her seizures), but overall she is doing so much better! She hasn't had to sleep with her oxygen on in over 2 weeks for the first time since January! She has been on her seizure medicine for 4 weeks now & she hasn't had any seizures yet! She also has been released from wearing her helmet, and is doing so much better with her eating! Prayers have definitely been answered, and we appreciate everyone who has prayed for Madison & for us.

I'm also so very thankful for our families. They have been our rock when times were hard & our biggest cheerleaders during the good times. I'm so glad that Jake & I have good relationships with our parents & siblings. I so look forward to anytime we get to spend with family!

My mom & dad are two of my best friends. I talk to them every single day & they are some of the first people I go to for advice. I'm also thankful that I still have a grandparent alive. I cherish the time I get to spend with my Gigi. She is definitely the rock of our family. She is the most caring & selfless person I have ever met. She loves to cook for our family & there are times she hasn't eaten her food yet before most of us are done because she's so busy making sure everyone else has what they need.

There are so many other things that I'm thankful for... friends, old & new church families, Madison's doctors & therapists, a warm roof over my head, plenty of food to eat, etc. All I can say is even when times are rough, you always have things to be thankful for. We have all been blessed far more than we deserve.

Happy Thanksgiving!

Great News!

Madison had her 2nd sleep study Sunday night. I thought that her apnea had gotten some better since she had her tonsils & adenoids out, but I wasn't sure how much. I was nervous how the results would turn out, especially since she had a pretty high fever when we did the study.

We are meeting with her ENT & pulmonologist December 11th to go over the results of the study & next steps... but I heard from her pulmonologist today with some preliminary results.

He was really pleased with how much better things looked! Last time, her apnea index (obstructive and central apnea combined) was 63%. On the recent study this number dropped to 1.9%. That is a HUGE improvement!!! She still had some episodes (we didn't get into the number today), but it is so much improved that she doesn't have to be on her oxygen at night unless she needs it!

This doesn't mean that she won't have some type of surgery to improve this number even more, but it should be minor. I was very worried that if the apnea had not improved, she could possibly be getting a trach put in. Thankfully this doesn't seem to even be on the drawing board anymore!!

I am so thankful for all the many prayers for Madison. We were expecting improvement but not to this degree. God continues to have His hand on Madison & we are so grateful!

Spooky Start to Halloween... Part 2

After my blog post yesterday, maybe 15 minutes passed by before Madison had another seizure (around 1:15pm). It lasted about a minute with her oxygen dropping & her right hand twitching this time. I called her pediatrician & made an appointment to take her to get checked out.

Jake came home & met me because I was terrified to drive by myself down to Goodlettsville in case she had another seizure in the car. I grabbed her Halloween costume (she was going to be Minnie Mouse) since we were supposed to go eat at my Gigi's that night for mine & Jake's birthdays. I wasn't sure if we'd get to go or not, but wanted to take everything just in case so we didn't have to drive all the way back home.

All her vitals were good at the pediatrician, and she was fine when Dr. White examined her. They called in a prescription for her everyday seizure medicine so we could pick it up. We decided to get it at the Walgreens in Springfield instead of the one in Goodlettsville (since we figured it would give the pharmacy time to get the medicine ready).

Madison fell asleep in the car right before we got into Springfield. We got to the first main light in Springfield, and she opened her eyes and looked at me. She had a weird look about her, so I grabbed her oxygen tank. All the sudden her eyes rolled back in her head & she started turning blue. It seemed like it took forever to get the tank to work & the oxygen put in her nose. I told Jake to turn left & go to Northcrest. Madison wasn't breathing & her whole face was turning purple. The oxygen was cranked up all the way, but since she wasn't breathing it wasn't doing any good.

Jake was having to drive almost the whole way to Northcrest in the turning lane, and I got Madison out of her car seat to try to turn her on her side. I could see her tongue was blocking her mouth / airway. I tried to pull down on her mouth to open the airway & she was so rigid I couldn't even budge her chin down. It probably took 2 minutes to get to the hospital. I seriously thought she wasn't going to make it because I couldn't get her to breathe. I jumped out of the truck & ran in the ER. As I was yelling that she wasn't breathing & we needed someone NOW - Madison started breathing some & her color was improving. Out of all the things that have happened so far, I think that was the scariest. I just felt helpless & had no idea what I could do. If this happens again I will try to do CPR, but I couldn't do it in the truck.

They made sure she was stable at Northcrest & started her seizure medicine, then she was transported to Vanderbilt. They did a chest x-ray & CT scan (which were normal). We got up to a room late last night & they finished hooking up the EEG about 1:30am. It ran until lunchtime today, and it also came back normal. She is now on seizure medicine twice a day. We are just praying that this is the right medicine for her & the right dosage. I don't know if I can take another day like yesterday. But if it happens, we will just trust in God & do all we can to help her.

I'm so thankful we happened to choose to go to Springfield instead of home. I know God had His hand over Madison & I'm so thankful that she is ok. We love this sweet little angel so much (even though she's going to give me a heart attack before I'm 30).

Spooky Start to Halloween

We had a spooky start to kick off Halloween last night... Madison had her 3rd "episode."

We always lay her down for bed & she puts herself to sleep. Then after she falls asleep we put her oxygen monitor & oxygen on. (If we try to do it when she's awake she just pulls it off & has even pulled the wires out of the pulsox before).

A few minutes after we laid her down, we heard a really weird noise. Almost sounded like she coughed, but she hasn't ever sounded like that before. So I went and checked on her... she had thrown up everywhere in her crib & was blue again with her eyes rolled back. Jake & I put her oxygen on her & cranked it up. Then when we got her monitor on her, her oxygen level was in the 60s / 70s. It took a minute or two to get her levels back to the 90's. We took her helmet off & she didn't have fever, but her hair was soaking wet.

Jake got her crib cleaned up while I gave her a bath. She just cried the whole time. :( Then I rocked her & she fell right asleep. After that she was ok during the night & woke up fine this morning.

I called her pediatrician & neurologist this morning to let them know what happened. They think that she is probably having seizures, but don't know that for certain. However, they are going to go ahead and start her today on an everyday seizure medicine. I hope that it does help, but I'm nervous about the possible side-effects. (mood changes, agitation, nausea, etc.)

Madison has another EEG scheduled for November 18th, just hoping they can figure out what's going on.

I'm glad she's feeling ok right now & can enjoy Halloween!!

Wonderfully Made

Madison had a genetics appointment today. (Just an update on what has been going on - no new information for us concerning her genetic abnormality. There still is no one they can find that has the exact duplication she does.) I was thinking about the appointment last night & trying to remember what doctors we had seen, what all had gone on in the past year, etc. I was flipping through the channels, and on TLC there was a show called "My 40 Year Old Child."

Of course I had to stop & see what it was about.

There was a man in Australia who was 40 years old, but he looked like he was 10. There was also a 6 year old in Montana that looked like & still had the mindset of a newborn. She was 10 pounds, still taking a bottle, etc. It was mind-blowing. There was a scientist in Florida who was trying to figure out what was causing their very rare condition by studying their DNA.

The scientist made a comment about how if just one thing in a person's DNA is off, it can cause severe conditions like these two people had.

We are all wonderfully & fearfully made by God. I don't understand how anyone can doubt that, especially when thinking about things like DNA. The way a baby is developed and formed is so specific, and if one thing is off you can get complications (like a genetic abnormality, or a syndrome, etc.) Even when someone's DNA isn't exactly perfect by the standards of science, they are perfect in God's eyes and are still made in His image.

God's hand is so evident in the world around us, and I love moments like I had last night when it just seems so clear and so evident. Those are the times I try to remember if I ever have doubts that creep in or questions that I can't seem to find an answer for.

Insanity - Starting Month 2

Jake & I started Month 2 of Insanity today... we had the Fitness Test & Max Interval Circuit, along with a volleyball game. I will be surprised if I can move tomorrow! We had heard that the 2nd month was no joke... and after only the first night in I definitely agree. I'm hoping that Max Interval Circuit is the hardest of the Month 2 exercises, but I'm not holding my breath.

We have had pretty good results so far... I've lost almost 8.8 pounds & 8 inches total; Jake has lost 11.2 pounds. :)


On a side note, Madison had her first official speech / feeding therapy session yesterday at Sumner Station. She did a lot better than I thought she would. She says mama, dada, and moo (for a cow) a lot; but yesterday she also said papa (my dad), bub bub (for bubble), and bye bye. So I was pretty happy with that!!

So every week we will have speech / feeding therapy on Wednesdays & her developmental therapist with TEIS on Fridays.

Next week she has a neurology appointment & a genetics appointment, so we'll see if there is any other information coming out of those appointments.

Insanity - Week 3

Well, Jake & I have finished Week 3 of Insanity. Some days doing the workouts are tough, but it helps having someone else that's doing it with you! The hardest part for us has been eating good on the weekends. Every weekend we have had family gatherings, weddings, or showers. I wanted to lose 2 pounds a week, and so far I've done that (down about 6.5 pounds total).

After this week we'll have gotten through the first month! Next week is supposed to be a recovery week. We may have to cut it short though to get started on Month 2 since we'll be going on vacation at the very end of the 9 weeks.

Jake took off work this week, so Madison and I are excited to have him with us! We're planning on taking Madison to the zoo & a pumpkin patch. I think she will love it!!

Glasses

Madison finally got her glasses today. It took almost 3 weeks from the time we went to the eye doctor for them to come in. We went to Vanderbilt to the eye doctor, but the glasses store didn't take our insurance. So I took Madi to my eye doctor in Portland. They didn't have many frames in her size, so they ordered some in for her to try on. That took about week to get those in. Then we picked out her frames, and it took almost two and a half weeks for the final frames to come in. She has a pretty strong prescription (+5), so they did a special lens where they wouldn't look really thick.

I am pretty happy with the way they look! I think she looks pretty adorable...

Instead of having a strap that goes around her head, we got the glasses that wrap around her ears. They are supposed to help keep them on better, but she can get them off pretty easily.

She kept wanting to look at herself in the mirror at the eye doctor when she put her glasses on. She didn't pull them off immediately either, so they said that's a good sign she is really seeing better. This afternoon she did good with leaving them on, but tonight has been a different story. She has pulled them off every few minutes. Hopefully it will just take her a couple of days to get adjusted & then she will leave them alone.

I'm excited to see if they make a big different in her walking / balance & being able to identify things!

15 Month Checkup

Madison had her 15 Month Checkup today. It went good for the most part! She's growing like a weed... 23 lbs 3oz (75%), 31 and a half inches long (79%), and her head was 18 inches (50%).

It took a while to go through all of Madison's doctor visits & things that have gone on in the last couple of months, but the only new appointment coming out of this checkup is going to see an orthopedic doctor. Madison's spine curves some & her chest bone sticks out pretty far, so we are going to get those things checked out. We go to that doctor the end of October.

She also has had feeding & speech evaluations. Based on those evaluations, they want her to do feeding therapy every other week & speech therapy once a week.

For feeding, she needs some help with chewing her food before swallowing. Right now we're still having to give her pureed foods with every meal & then soft solids. She gets choked easily on firmer or harder foods because she's just trying to swallow them whole. She also is tongue-tied, so they think that could be limiting her tongue movement. (So we may be getting her tongue clipped in the next few months).

For speech, she had a mild to moderate delay in expressive & receptive language. Basically the biggest things she was behind on are words (she only says 3 or 4 & doesn't have a lot of different sounds) & following commands. (I think part of that is my fault because I am with her all the time and know what she wants or needs. She doesn't really have to ask for anything).

We are still waiting to get her glasses. They were supposed to be in today, but the eye doctor said it will probably be early next week before they are in.

I know there are some things that she is going to be behind on due to some of her medical problems & hospital stays, but after her evaluations and checkup today I've been feeling a little down. I'm afraid that she would be doing better learning-wise in a daycare or where she's with other kids. (But I know medically the best thing for her is to be home with me right now). Today on the 16-month checklist at the doctor's office she wasn't doing probably half of the things on the list. Some of the questions they asked me on things she was doing, I hadn't even thought to let her try that yet. I guess I just need to look more at the milestones & work on specific things from that list every day.

Some of the things she wasn't doing yet that I can think of off the top of my head were:
-Does she climb up on things? (Umm no, she just started walking pretty good by herself)
-If you ask her to get an item from another room will she go get it?
-Does she get your attention or ask for help in some way if she wants something?
-Does she sing along with songs? (Nope but she'll dance)
-Does she play peekaboo? (Nope only patty-cake)
-Can she put a small object in a clear bottle? (Never thought about doing that)
-Can she brush her hair? (Well she wears a helmet all the time, so never thought about letting her try that)

I just feel like there's a lot of things that never even crossed my mind, and it makes me feel like I should have known or had an idea what to do.

She had to get several vaccines today & we got her flu shot, so she'll probably be feeling pretty puny the next couple of days.

Insanity - Week 1

Jake & I finished week 1 of Insanity yesterday. The workouts were tough, but the worst one by far was Pure Cardio. It was awful!! We have to do it again tomorrow, so I'm hoping to not have to take as many breaks (even though I'm sure there will still be quite a few).

Along with doing the workout plan, we're counting calories. I'm trying to eat about 1500 calories a day. The week went good until Saturday night & lunch Sunday. Saturday night we went to a friend's wedding shower, and they had Mexican food (my absolute favorite), so I had to eat some tacos & chips. Then Sunday, we ate lunch for my dad & brother's birthdays. All in all I was pretty proud of myself for the week & lost almost 3 pounds (my goal while doing Insanity is to lose 2 pounds a week).

After we get through this week we will have another Fit Test & check our measurements next Monday. Eight more weeks to go!

Insanity

Jake & I have both been wanting to lose some weight & get back in better shape for a while now. We are going to start Insanity Monday. I've done a few of the videos before & know that it's going to be a tough 60 days! I'm hoping by doing it together we can stick to it. The harder thing for us though will be eating better - our biggest issue is definitely portion sizes (and snacking for me). Being home with Madison has not been good for my eating habits. I don't eat out as often, but the kitchen is just a few steps away. I eat when I'm stressed - so the past year has not helped in that aspect!

When we decided we were going to try to have a baby, I lost almost 30 pounds... I was eating 1200 - 1500 calories a day & doing a lot of workout classes at a gym in Bowling Green. I was the weight I was when I was playing college volleyball. Then I gained 40 pounds total when I was pregnant with Madison. When she was two weeks old I had lost about 25 pounds, but I have been stuck there ever since. I still need to lose about 15 pounds to be where I was pre-pregnancy. So my goal with Insanity will be to lost at least that 15 pounds (the more the merrier though)!

If you've done Insanity, any tips or things learned would be greatly appreciated, especially if you had success with a certain type of eating plan.

Sensory Bag

I've seen a lot of things on Pinterest about sensory play for kids. One thing I saw on several sites was a sensory bag kids can play with. I thought making one would be good for Madison because she needs to work on touching different kinds of textures. She doesn't like some slimy, bumpy, and rough textures (like some slimy food, toys with raised bumps on them, and grass).

Here is the bag I made...

I took a freezer Ziploc bag & added a mixture of hair gel and water to it. Then I added some things that I found at the dollar store:  "googly" eyes, beads, erasers, squishy balls, dinosaurs. Then I used duct tape to seal a couple of the edges to help prevent any leaking.

Madison didn't play with it a whole lot this morning, but maybe she'll at least pick it up some to see what it feels like.

 I also picked her up a couple of toys that are a little slimy & have a bumpy texture to them as well. She wouldn't touch them at all this morning, but hopefully we can work on that too. She's getting better with slimy foods - last night she played in some spaghetti & actually picked it up and put it in her mouth.

I'll take the baby steps :)

Madison's Diagnosis

I have been wanting to write this post for a while now, but just haven't been ready to share what Madison's diagnosis is. She has a genetic abnormality, and when we first found out about it when she was in the NICU, I was very upset about it. We didn't tell anyone except close family. I have told a few people about it since then if it has come up in conversation, and some of you may have assumed something based on all the issues she has had. I was just so afraid that she would be treated differently if everyone knew, but the truth is, she is treated differently just based on everything that has happened in the past 14 months.

She has 16q22.3-16q24.3 duplication with attachment to a derivative chromosome 7. What does this mean? We have no idea. Vanderbilt has no exact match for this mutation for anyone else in their system. (So don't try to Google it because you won't find anything that is relevant). Our geneticist made sure to make that clear to us when he first evaluated Madison.

The only things we know for sure are that this mutation caused her to only have one kidney, and she has a 50% chance of passing on this mutation to her children. I also have some suspicions that her sleep apnea, respiratory issues, and slight development delays could be attributed to this. However, we have no way of really knowing that for sure. Jake & I both had our genes tested, and ours were normal. So any future children for us shouldn't really have a chance for this mutation.

Her prognosis from the geneticist we see is really good. He doesn't expect her to have major issues that he can foresee right now. However, the scary thing for me is we just have to wait and see what may or may not happen. She has done pretty well so far considering everything she's been through, so I'm just hoping that things continue to improve for her.

If anyone has questions, feel free to ask. I just felt like it was time to not be afraid to let people know the underlying issue that we haven't really talked about much. I'm comfortable with it now & know that she really is one of a kind :)

Lots of Appointments!

This week has been really busy so far. We had 4 doctor's appointments between yesterday & today. Between the 2 days, we also have added 3 new doctors / specialists we have to go see in the next month.

Madison's pediatrician referred us to an eye doctor at Vanderbilt to get her eyes checked out. One of her eyes always runs, so I'm afraid she has a clogged tear duct that she never grew out of. We also are going to have her vision checked.

Then today she had another swallow study done. She never has had a clear chest x-ray so they are thinking she may be aspirating some. The study showed that she did aspirate some, so we are going to have a feeding evaluation next week & probably will be going to a specialist for feeding therapy after the evaluation.

She's also going for a speech evaluation towards the end of September.

Lots & lots going on :)

On a side note, she took a few steps by herself yesterday! She's getting closer and closer to walking! It cracks me up because she knows she did something too & she gets so excited! Love my sweet little princess to pieces!!

What's Been Going On

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!

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.

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!

 

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...

 

 





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.

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!!

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.

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!

Thankful

Today has been a laid-back, relaxing day for us. We didn't go to church this morning because Madison still has a bad cough & a constant runny nose. She has slept a lot today, but when she's been awake we have had a really good day.

She has learned to play peek-a-boo if you put a blanket over her head. It's so sweet! Today she also was able to go from sitting on to her hands & knees. She's learning something new all the time!

This week has been pretty hard for me. Taking care of a baby who isn't feeling well can be challenging at times. Madison also had several doctor's appointments this week, and we have some challenges ahead of us coming out of those appointments. But today while she's been napping I've had some time to just sit & think. Despite life's challenges, there is always something to be thankful for.

Madison has overcome a lot of obstacles in the 10 months she's been in this world, and I am so thankful every single day for the progress she has made. I knew I would be so in love with her when she was born, but I could never imagine how much! I am so thankful that God allowed Jake & I to be her parents, and I could not imagine life without her.

On top of that, we have been so blessed with family & friends. I know that I can always count on my family through the good times and bad. I am thankful that I have parents that I can call anytime & talk to about anything. When I'm upset or needing to talk, the first people I want to talk to besides Jake are my mom and dad.

Last, but certainly not least, I am thankful for God. Through this past year, there have been a lot of times I haven't understood why things were happening. But I believe my faith has grown stronger through everything. We have had definite reminders that God is in control and He has plans for our lives & Madison's. We just have to remember to trust Him. We may not always understand, but we just have to continue to trust.

When you are having a rough time and feeling discouraged, just remember to count your blessings. It will put things in perspective & help you to remember you always have something to be thankful for.

Crazy Day

Today did not go as I had planned (I find that happening a whole lot more now that I have a child). Madison had an appointment scheduled with a crainiofacial doctor at Vanderbilt at 8:30 this morning. This is around the time I get her up, so we had a much earlier morning than usual. We got up at 5:30 to do her morning routine of reflux medicine / wait 30 minutes / 8 oz bottle.

First problem... she was running a low-grade temperature, had a horrible cough, and was congested. This was an important appointment though, so we went ahead and got ready to leave.

Second problem... I put her in the car seat, buckle her up, and shut the door. No sooner have I went around the car and opened my door, I look inside and she is throwing up. All over her... all over the back seat... all in her car seat...

Jake changes her clothes while I wipe down the car seat the best I can. I know she can't help it, but it is so frustrating, especially since she hasn't done this in a long time. (It used to happen multiple times a week). Anytime she is really congested, she almost gets strangled on the drainage. That combined with her acid reflux is a bad combination.

So we finally get going to meet my mom who thankfully was able to go with me to her appointment.

Third problem... she throws up AGAIN in the car seat on the way to meet mama.

Fast forward to her crainiofacial appointment. Good news - no surgery needed. Not so great news - he recommends her wearing a helmet to shape her head. So I call the clinic to get her fitted for a helmet, and they have an opening at noon.

Fourth problem... I am down to one burp cloth, one blanket, and one clean outfit. At the rate Madison went through linens / clothes during the morning, she may have to go in her diaper to get fitted for her helmet.

Luckily, no major issues until her noon appointment or on the way home after. We go back next week to get her helmet (might I add it's light pink & I may have to just hot glue a bow on it).

She's a couple of months past the age they typically would like to have babies in a helmet, but they think we will still see some improvement & some rounding of the back of her head. She will have to wear it 24 / 7 for about 6 months. I was happy to hear that we can take it off for pictures / special occasions!

Fifth problem... insurance won't cover a helmet for a baby unless they have had head surgery. So we are out $1,500.

This afternoon we went to our 3rd doctor's appointment for the day since she wasn't feeling well. Luckily, the RSV test was negative, so they think it's just a bad cold.

Hoping my baby feels better tomorrow & we have a calmer day!

Cleaning Schedule

I live by my planner. If I want to make sure to get something done, I write it down. So when I decided to stay home with Madison, I made out a cleaning schedule to hang on the refrigerator. I have daily, weekly, monthly, and quarterly chores mapped out. I knew if I just focused on a few things each day instead of trying to clean my whole house in one sitting that I could keep up with everything.

 

DAILY:

Make bed(s)

Pick up any clutter

Dishes

Sweep kitchen



 

This may seem silly to some people, but when you are home with a baby there are days when if you get the bed made you are doing good.

MONDAY:
Laundry (clothes & towels)

TUESDAY:
Bathrooms
Windows / Mirrors

WEDNESDAY:
Dust
Vacuum & mop floors

THURSDAY:
Clean out fridge / pantry
Wipe down kitchen surfaces
Wipe inside of oven, fridge, and microwave
Empty trash / wipe down trash cans

FRIDAY:
Laundry (clothes & sheets / pillowcases)

SATURDAY / SUNDAY:
Catch up day
Store list / store

It has really helped me to keep on top of the housework & it doesn't take a lot of time each day to get everything on my list done. I also have more time on the weekends to spend time with Jake, family, & friends instead of spending all day on Saturday cleaning.

I also have some things that I do once a month & every 3 months. It's more of your "deep cleaning" like cleaning grout, baseboards / molding, organizing cabinets, etc.

If you're having a hard time getting everything you need to done, I really would recommend making out some sort of schedule & placing it where you will see it every day. Once you get into the habit of doing it each week, it becomes second nature.

CT Scan

Very good news! Madison's CT Scan results came back normal! There was no bone fusion in her skull, and her brain looked normal. She has a flat spot on the back of her head, but it's not in the typical place a flat spot usually is in a baby. So her pediatrician is referring her to a craniofacial specialist at Vanderbilt. (I think this makes doctor #7 for Madison now... ) He wants them to evaulate her to see if they think anything needs to be done.

Even though it seems like we will get one issue resolved with Madison & another comes up, I'm so grateful for how healthy she has been since the beginning of the year. When we were at Vanderbilt last week getting her scan done, I saw many other children with much worse problems than we have dealt with. It really puts things in perspective... I thank God every day for my sweet, beautiful little girl that He has blessed me with & am so glad her CT results came back normal!

We are still waiting on the results from the sleep study, and we have an appointment with her pulmonary doctor next week. Hopefully we will get some answers then!

Easter

Madison had a great first Easter! She got to celebrate Easter 2 different weekends...

The Sunday before Easter we celebrated with Jake's family since they would all be out-of-town on Easter. Madison had an Easter basket from her Granny & Pa, and she got to play with her cousins!
                                                              

                         

 

 

Easter morning, Madison looked her at Easter basket from the Easter Bunny... she wasn't really excited about it, but I think next year will be fun :) She will also get to hunt Easter eggs next year!

 

 



We went to church at Rock Springs & Madison was so good during the service. Then we went to my parents' house for lunch. Madison opened her presents from Mimi & Papa, and she really liked her sunglasses!

Of course the day didn't go without any hiccups... Madison threw up in the car on the way to church. Luckily I was able to catch most of it in a blanket instead of it getting on her pretty new Easter dress!

We had such a great day spending time with family! We ate at my Gigi's house for an early supper, and I absolutely love how close the "Williams family" is! Every time we get together (which is pretty often), it's all of the aunts, uncles, and cousins. It gets a little hectic & loud at times, but I love it! I'm so glad Madison is able to grow up with that because there aren't many extended families who experience that kind of closeness.

As Madison gets older, I want to make sure she knows the real meaning of Easter and what it represents. The easter baskets, egg hunts, and family dinners are great & fun, but none of that compares to the real meaning behind Easter. It's a celebration of Jesus dying for our sins & being resurrected. I hope everyone had a great Easter and got to spend time with their loved ones, but take a minute and reflect on what the meaning behind Easter means to you & say a prayer of thanks.

Suzy Homemaker

I feel like I have had such a productive day today... I was actually in the mood to clean (very rare). Now I'm no Suzy Homemaker, but I do like to keep my house picked up & clean. However, I've never thought about needing to clean my washing machine & dishwasher. I thought they were getting cleaned as the dishes & clothes were run through their cycles.

So I found a few different websites on Pinterest that I thought I would give a try...

1) Cleaning your dishwasher:

http://www.onegoodthingbyjillee.com/2012/02/how-to-clean-your-dishwasher.html

Super easy to do, and I could tell a big difference once I finished! I didn't realize how dingy my dishwasher was until I saw how white & shiny it was after I cleaned it!

2) Cleaning your washing machine:

http://www.onegoodthingbyjillee.com/2012/04/how-to-clean-your-top-loader-washing.html

This was easy too, but to go through all the steps it takes several hours. I wouldn't start this unless you have 3-4 hours to complete it. I can tell a difference in the way my washing machine smells - it had started to get almost a musty smell to it. So glad I went ahead and did this today!

I'm ashamed to say I haven't cleaned my washing machine in the 3 1/2 years Jake and I have been married, so it definitely needed it!

3) Another way to clean your kitchen sink:

http://the-happyhome.blogspot.com/2012/10/how-to-make-your-stainless-shine.html

Now I'm not going to tell you my sink looked as fantastic as the picture on the website, but it did look much more shiny. I washed a few dishes in it after it had been cleaned, and it still looked really good. So definitely think it's worth it to clean my sink like this again.

To continue my productive day, I'm going to go run :)

OCD Breakthrough

The day we brought Madison home from the Baptist NICU I started a notebook keeping track of how much she ate, how much she spit up, and her wet/dirty diapers. I obsessively wrote in this notebook every single day. If I (or Jake) forgot to write something down it made me very anxious.

Some of you may be thinking "what a control freak." Well, admittedly I am. But there was also a reason for it in this case. After Madison was born, she was taken to the NICU because her umbilical cord was wrapped around her neck & she had trouble breathing. It only took a day or so before her breathing was under control. The main issue we had with her was getting her to eat & keep it down. She was in the NICU for 15 days with a feeding tube. We were able to take her home with the NG-tube with the hopes that she would take her bottles by mouth, but if she hadn't eaten what she needed to we could give it to her through the feeding tube.

The first night we were home, Madison pulled out her NG-tube. I of course freaked out, but our pediatrician wanted to see how she did for a couple of days without it. She has never looked back. We have had our issues with reflux & exorcist-like spit up episodes, but she has continued to improve and thrive. Every time we go to the doctor she has gained more than enough weight, so I finally decided this weekend it was time to let go some of the control.

So I put the notebook up over the weekend, and just want to enjoy my time I have left feeding Madison her bottles instead of worrying if she only ate 7 oz instead of 8.

Turning Point

I started my first "big girl" job at Fruit of the Loom in June of 2009. I was an Associate Customer Business Manager (a.k.a. Account Manager) for Kmart. I enjoyed the amazing people I got to work with, and I like to think that I was good at what I did. I had a wonderful boss & co-workers... when I found out I was pregnant with Madison they were there for me through my entire pregnancy. My "fruit friends" were a great support system for me through the challenges Jake, Madison, & I have faced during Madison's short time in this world.

I'll get into what all has gone on with Madison in a later post, but for now I want to focus on December 27, 2012.

Madison constantly had fluid in her ears & was having difficulty passing hearing screens, so her ENT decided it would be best for her to go ahead and get ear tubes. Jake & I took her to Vanderbilt on December 27 for what we thought would be a quick, routine surgery. Even though we had heard getting ear tubes had worked wonders for friends' children & was a quick procedure, we were still nervous. Dr. Goudy, Madison's ENT, talked to us before they took Madison back to surgery and said he expected the procedure to be quick. He said he would be in to get us from the waiting room with an update in 15 to 20 minutes.

We waited and waited... and waited some more. Over an hour went by without a word from Dr. Goudy. I began to get really nervous & told Jake that something wasn't right. I knew we should have already been able to see Madison. Finally Dr. Goudy came to talk to us. He said that typically with putting in ear tubes, babies are put to sleep using gas. When they gave the gas to Madison, her vocal chords closed up and she stopped breathing. They got a breathing tube down her throat & were able to put her to sleep using an IV. He said she was taking a little longer to wake up since they had to put her to sleep using the IV.

I felt a little better since the surgery was over. We let our families know that she was out of surgery & we would see her soon. During this time, I didn't realize how serious the situation really was. We didn't know until later when we heard the nurses talking that Madison wasn't able to breathe by herself coming out of surgery. They had her on a ventilator for over 30 minutes until she was able to breathe on her own.

They came to get us to see our sweet baby in recovery. When we got to her bed I couldn't believe the way she looked. She was on oxygen & you could tell she was struggling to breathe. I felt so helpless... they said she was taking a long time to come out of anethesia, but she should wake up soon. So we waited some more with no change. After a couple of hours, the doctors decided that she may need to stay overnight to monitor her oxygen & get her to drink a bottle.

By 4:00 or 5:00 that afternoon we were moved up to a room. By this time, Madison should have been off of oxygen and pretty much back to normal. It was decided that some tests should be run to make sure there weren't any other issues going on. Madison had her nose swabbed and a chest xray. The tests showed that she had RSV. She had no symptoms going into surgery, so we were shocked. But it could explain why she was having trouble breathing coming out of surgery since RSV is a respiratory virus.

Madison had been in daycare for about 3 months by the end of December. She constantly battled colds & illnesses while she was there. Also, she struggled to eat well when she was at daycare. I was stressed out every day while I was at work wondering how she was doing & if she had eaten anything. There were days where they could only get her to drink a few ounces the whole time she was there. Jake & I had to stay up until midnight some nights to try to get extra feedings in for her. I knew she had probably gotten the RSV at daycare.

Several days went by & Madison continued to get worse. I had reached my breaking point & told Jake I wanted to stay home with her. I just could not send her back to daycare only to get sick again. (On a side note, this also would be Madison's 4th hospital stay - more to come in a later post on the other stays). He agreed with me & said we would make it work. It wasn't something that we planned for, but we would do what we had to in order to keep her as healthy as possible. I thought about it for a few more days, then decided to call my boss.

By this time, we had been at Vanderbilt for over a week. I called my boss & just broke down. I told him that I felt like I needed to be home with Madison. He was so understanding, and I appreciate so much the opportunities and support he gave me during my time at FOL. I put my 2 weeks notice in & was able to work from home until my last work day. I was sad that I was leaving my job, but so grateful for the experiences I had & what I learned while there. I also am grateful for the friends I made while there. I love & miss you all!

We ended up being at Vanderbilt for almost 2 weeks. They wanted Madison to be off of oxygen completely before going home. The last couple of days we were there, Madison wouldn't need any oxygen until she got into a deep sleep. Then her stats would drop. We were able to bring her home with an oxygen machine & a monitor for when she slept at night. She is still on oxygen right now & we have a sleep study next week to hopefully figure out why she is needing some oxygen while sleeping.

The decision Jake & I made for me to stay home with Madison is something I will never regret. Since I have been home with her she has thrived. I am so thankful that I have this opportunity. I feel as if a huge weight has been lifted from my shoulders & am loving getting to see my sweet baby girl's smiling face all day long. I feel like I'm able to be a better mother & wife than I was when I was working. We are just taking it month by month since this was something we hadn't planned for financially, and I want to take advantage of every second I get to spend with Madison at home.

Jumping on the blog bandwagon

I love to read several of my friends' blogs that they write. So I've decided to start writing a blog when I get a chance about staying home with Madison. Since adult conversation is limited during the day, this will give me a chance to get my thoughts out about what is going on in my life (and more importantly in Madison's).

I hope my family, friends, and others will enjoy what I write, but I also want to have something that I can look back on to remember this special time. I also hope Madison will one day be able to look back at what I've written to get a glimpse into this time we have together.

For those that may not know me, I am married to the most amazing man, Jake. We have a beautiful baby girl, Madison, that just turned 9 months old. My family is my world, and the last 9 months have brought about some major challenges for us. But through it all, it has made my marriage stronger.

More to come about why I decided to stay home with Madison in the next post.