Testing is officially booked

We are very excited..the speech department called me from the hospital and we spoke about Dani's issues and we are going in for her modified barium testing on July 14th. Seems so far away but at least it is coming. The woman I spoke to was very helpful and says it sounds do much like reflux and the test will help determine that. It will also eliminate or rule out aspiration. She said that is the main concern right now.
In the mean time...she is back to spitting up again..not a violently but it is back. She slept great the first two nights but we were up over and over again last night. The nurse at the hospital says that her getting up to nurse during the night helps push the acid back down so she can sleep again. Laying flat out makes the reflux come up and into her chest and throat. Breastmilk helps push it away. They need to find whet will help keep it down so she can sleep.

I am so tired and I am complaining......AAAAHHHHHHHHH!!! Yawn Yawn!! There I have had my complaining session. I need sleep and so does she...poor thing. She is up way more than she was a newborn. That is crazy.
I am spending so much time with her and I need to spend some time with the other girls. I want to write about our adventures too.................maybe I can do that soon. Maybe tomorrow....got to catch a nap or I am no good to anyone.....not even me.

The countdown is on to answers ..............14 days.

Nicole

A great day....

Here is Gracelynn


The windows are open and let the breeze come on in.
It has been so hot here the last few days we have been inside for the most part because the humidity was so high...it was too hard on the little ones. When we woke up today it was gorgeous out. The breeze was very cool and just right to come in the windows and refresh the house. The older kids played outside with Lexingtyn in her new playhouse while I cuddled with Danikah in the house. I gave her her medicine and she had a bottle. She drank is so good and drifted off to sleep cuddled in a blanket while the breeze coming in blew the hair on top of her head. What a beautiful sight. I am so grateful she is here. I wondered when we got pregnant for her what her purpose would be and the differences she would make to this world. Just sitting in the quiet morning and watching her sleep she changes my outlook on the world without any effort. What a beautiful thing. She struggles with food and digestion in general but she still ceases to amaze us with her milestones.
She started to crawl last week and not just scooting ...she is fast. She flies around the downstairs in her walker and today she was crawling and she just stopped and sat up. The look on her face was priceless. We caught it on video.
On the medical side she is tolerating her formula better. She is still nursing for the most part but the doctor wants to try and fill her tummy more at night so she gets better sleep so we have been doing formula before bed. The spitting up of formula has slowed down and most of the bottles she keeps down totally. She is still not allowed any food until testing is finished but she is good. She is sleeping through the night again. We put her down at 9:30 or so and she sleeps until 4 am or so...what a blessing. That may not seem like through the night but to me 6 hours or better is great to me!!!

Some of you have asked what the other girls are up too and here you go. Lexingtyn is just about ready to use the potty and very excited about it. Emma and Gracie passed their school year and excited to go into grade 4 and 2. They are growing up so fast.

Thanks for the continuing prayers and God Bless!!

Nicole

Baby steps to answers.....

We arrived at the hospital this morning and sat in the peads waiting room with anxiety as to what was to come and what we would learn about our Dani. Lexingtyn was with us and she was playing like we took her to a new play place and had no idea we were in a hospital. She met a little guy who was there to have surgery today ( for what I do not know) but she kept saying "Hi , buddy" it was so cute.
We went in to see the Dr. and she was very thorough. She asked us tons of questions. I think it drew her a very clear picture of our concerns. She does not think it is allergies and leaning towards a narrow esophagus. She believes that thin liquids can get by but nothing with consistency. She wants the speech therapy department to look at her and perform a " modified barium" She will drink some breastmilk, formula, and eat some solids and they will be watching her esophagus to see if it is too narrow for food to pass by. This would be why she throws up so violently. She does think she has reflux to an extent and has prescribed her Ranitidine ( Zantac).
This will be investigated further with the tests. This is being scheduled as we speak and I will get an appt to get this done ASAP. After this is done and it is discovered that yes she has a narrow esophagus....it will be explained to us what that means and what can be done. If this is not the case she will talk to us about the next step in the process to figure out why she is like this. She is also concerned about the wheezing that she does and thinks it has something to do with this and may have been a red flag when she was born......

She did explain that her not wanting to swallow or acting as if she can't swallow is more like a trigger to say the drain is blocked and it won't go down. We saw the red flags and knew something wasn't right and we are great advocates for her.
We are very optimistic that she will get to the bottom of this and make Dani better or point us in the right direction to who can fix it.

On a better note she is gaining weight and lots of it. Since her appt two weeks ago she was 17 lbs 14ozs and today she is 18lbs 9ozs. She is 27 1/2 inches long. This is good for her but bad for us!!! She is up every hour and a half to nurse day and night. She is craving something heavier and needs food. Yes she is getting awesome nutrition from breastmilk.......but.......she isn't sleeping properly for her age and she was sleeping wonderfully until this happened...so she is capable of sleeping through the night because she was before. Her body needs other nutrients to get a good sleeping pattern and feed her muscles and bones the other things they need. Plus the breastmilk isn't filling her up anymore and she needs something heavier to sleep longer at night. She is very active and I know breastmilk is awesome and that is why I do it but you can't live on breastmilk. There comes a time for every kid that more is needed and she needs more.

I can't wait to see how the meds assist her and how her tests help us figure out her diagnosis.

say a prayer this is over sooner than later....my Danikah is hungry!!!! LOL!!!

Our plate can't hold anymore....

It has been quite an eventful week or so. We have been waiting impatiently to have Danikah assessed as to her problem and get her on the right track. We have had many sleepless nights where I find myself in tears (quietly) so not to wake daddy but I don't know how to help her. Things are changing with her and for the most part it is very hard to put into words. She used to sleep through the night or have one feeding but ever since we tried food and really introduced formula to help fill her up.....she is different. She used to vomit the food but Kevin and I have noticed that after a bottle of formula she brings it back up and it is really curdled. She moans after a bottle feeding and just can't settle to go to sleep. It sounds very simple and she just has a tummy ache but it is more than that to us. We taped her last night sleeping on Kevins' shoulder and the breathing was awful but she is not sick. This has been an issue since she was born. She did not cry after birth like most babies and she didn't cough up all that mucous. She barely sneezed to get it out either. The nurses tried to get her to cry but no luck. She was very quiet if I do say so myself...my other girls were criers. She has been weezy since birth and when it concerned us ....it didn't concern Dr.'s. Everytime someone would hold her they would ask why she breathed that way and my answer was .."They say it is normal" Well what if it isn't. What if something is blocking her in some way. I hate this.
We got a call from a peadiatrician yesterday that wants to see Dani on Thursday morning at her clinic at the hospital. She is the same peadiatrician that looked after Lexingtyn with her heart defect. I am confident now that we have her she will do what is needed to figure this out.
I am hoping we can have some answers soon as her and I need some sleep. We are back to just strictly nursing and there is no spit up or vomiting so she is better for now. I was working on weaning her off since i have to have surgery in September and thought if she was used being away from me a bit ( which she is attached to my hip these days) it would make my 3-4 day hospital stay a little easier on her and me. I won't be able to pump the first day or so in the hospital due to me being out of it and I refuse to engorge and go through that. We ( Kevin and I ) decided it would be easier to have her weaned and make both of us comfortable. The only thing that she isn't throwing up is breastmilk.....there goes that plan.
When you have a houseful of four little ladies...making my hospital stay and my absence a little easier for them to take makes me happy. Gracelynn has anxiety when I have to be hospitalized and I hate to upset any of them. More stress for me...YEAH!!! Not to mention Kevin is on his own back and forth to the hospital and home and the girls will want to see me. He is very capable ....I have no worries about that...he is an awesome dad. I just think it will be a big job since we usually help each other and I am going to b useless for a few days at least.
To add to my plate my dad is sick and we just found out. I won't go into great detail to respect his privacy but things do not look very good and we don't know what will happen or how long we have him for but I am scared. When it rains it pours.......

I will say that I am very blessed to be married to an unbelieveable man and I am so glad to go through this with him by my side. My girls are amazing and I would do and will do anything for them.......they are my world.

Please say a prayer for my Danikah and for my dad who has a very big battle ahead of him. May both of you be well again!!!!

Nicole

A Cause For Concern

Well a new day and how things change. I took Danikah to the Dr's today and it was to get her 6 month vaccinations and address a few concerns. Danikah's always been in the 90-95th percentile in weight but that changed today. Although for 6 1/2 months old she weighed in at 17lbs 14ozs....her flow of weight gain has slowed down. At her 4 month check up she was 16lbs 15ozs. Our concern starts with the fact that she is not tolerating solid foods. I have 3 other children and around 4 1/2 moths I give cereal...after a month I bring out the veggies than fruits and after the 6 month check-up..he gives us the go ahead to add meats. We are @ 6 1/2 months and she can't even eat cereal.
Every time we feed her a spoonful she gags so hard and then chokes or aspirates and it is very scary. 2 hours later she gags and projectile vomits. She has not kept down a meal yet. That is a month and half of trying.

There are a few things they are looking at....
An immature digestive tract which hasn't been completely explained to me yet.
FPIES which is Food Protien Induced Enterocolitis Syndrome..babies with this cannot tolerate rice, barely, wheat ,veggies, fruits and meats like chicken and turkey. They will vomit their meal about two hours after swallowed but they can tolerate breastmilk and formula.
It lowers their blood pressure and causes severe diarrehea...sometimes with blood. It is a gastrointestinal disorder. She wouldn't be able to have solids until after her first birthday.

I am worried as we have no idea what is wrong with her and she wants food so bad. I don't know how to help her and that is an awful feeling as a mom. she is my baby...a baby that was not planned. She has changed my life as have my other girls but there is something about her that makes me wonder why she was sent to us and what wonderful things she will teach us....

Say a prayer for my sweet Dani.....God Bless



Nicole

A New Day.......

I have been wanting to do this for such a long time now and I am very excited to finally be writing my first entry. I came into the blogging world when I met a little girl named Kayleigh Anne Freeman and her parents. I followed her journey on a regular basis from before she was born until the day she went to be with Jesus. We had all hoped for a sweet homecoming for Adam and Aimee's little girl but she was meant to be with God.

Although I was never a huge religious person I do believe in the power of God and my children are being raised in the Catholic faith. I have renewed my faith in God all because of Kayleigh. Kayleigh helped me remember just how lucky I am and what I should appreciate. I have four beautiful children and have never had to leave them overnight alone in a hospital or go to bed at night wondering if they would ever come home to me. Kayleigh changed my life as so did my children but in a way that will positively affect how my children will be raised and loved.

I have been very fortunate to have met my husband when we were in high school and we have been together almost 18 years. I feel about him now like I did when I was 17. I couldn't imagine my life without him. He asked me to marry him after 6 years of dating and on October 3rd 1998....he became my one and only. Then we decided to have a child and we had Emma-Deane. She is a good spirit with a love for horses and all other animals. A few years later we found out Gracelynn was on her way. She is a very feisty girl but with a kind heart. No body better mess with her when she is older....she doesn't like doing what others tell her...quite the independant individual.
A few years went by and we decided to have one more baby and along came Lexingtyn. Now this girl has spunk. She has a mind of her own but will give hugs and kisses all day long. She was our baby that gave us the biggest scare while in utero. Her 16 weeks ultrasound was not very good and they were concerned about her chambers and valves in her heart. It was discovered that she had a hole in her heart and they would resolve the problem after birth. After Lexi was born it was discovered that is was a small hole and 3 months later it was closed...all by itself. When Lexi was 6 months old Kevin was booked to have "the snip" as we were all done...3 girls and no boys for us!!
Kevin went in on March 11th 2008 to have it done but what we didn't know was that...a fourth baby had already been conceived and was gonna bless our life in November.
Danikah is a mommy's girl and the only baby to date that I have been able to nurse successfully.

I couldn't be happier or more proud of the family Kevin and myself have raised. Our life is very busy but some people are not able to have children or struggle to have the one they were fortunate to have. I have four very healthy vibrant girls and I am very blessed to say they are MINE!!!!