Back on track.....

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The last few days have been very eventful. Things are going our way but slowly.
The other night Emma, Gracie, and Lexi were tickling, wrestling on the floor when we heard a pop...someone hurt something. Well sure enough once we got everyone cleared from the floor Emma was crying and said her thumb hurt really bad. It looked o.k. that night so we thought she sprained it maybe......
The next morning it was definitely swollen and it was a nice range of colors...not to mention it was soooo crooked. I took her to be seen and she was sent for x-rays. We waited all weekend with her thumb in a splint. The clinic called on Monday and we had to see the Dr. I took her in after the call and yes it was broken. We had to go to Metropolitan Hospital to see a plastic surgeon on Wednesday. After a very long wait, and Emma getting really impatient...the Dr. confirmed the break but said it was in a good spot and would heal on its on in about 10 days from the day she hurt it. he wrapped it in a better splint and sent us on our way. We got home around lunch and I had to eat something to turn a round and go back to see Danikah's pediatrician.
Well what a beautiful day it turned out to be after we left there. I am in such a great mood!! YEAH!
Danikah and I saw the Dr and she was very happy to tell us that her feeding assessment was a success and the trach and stomach were indeed attached ...so no problems there. YIPPEE!!!!!
She also decided to change meds to Prevacid just as a trial as the Ranitidine was binding her up and since I stopped that med....she really hasn't been spitting up as much. She didn't feel that an upper GI would be a benefit as Dani would have been throwing up everything including fluids from the start if it was that. She and I both agree that Dani's issues aside from the reflux are psychological or behavioural and she has a hard time with certain textures. Some babies just skip right over baby food and move on to the good stuff....real food!!! We started feeding her a few days before the appointment because she was asking to have something and although she gagged ( very hard) on some of it....she held it down and did o.k. She does love fruits, is working on veggies...but hates cereal. I have tried everyones suggestions and she does not want it and that is o.k. I will get Danikah her grains a different way. The Dr then weighed her. keep in mind that until a few weeks ago she was breast fed and now is drinking formula. At her 6 1/2 month check up when we addressed the problem....she was just under 17 lbs 14 ozs(breastfed) at just over 7 months when she was assessed by the specialist she was 19lbs.She is 8 months old today and weighed in yesterday at 21 lbs!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
That is with no solids...can you believe that. She doesn't eat in excess and she is very active. A month ago she was pulling herself along but not quite crawling and I wasn't able to leave her in a sitting position and walk away as she would still fall over. Specialist said she was scooting. A few days later she was really crawling and fast too. She crawling and then sitting up on her own and was very much in control. Then about 3-4 weeks ago she started wanting to pull her self to her knees on objects on the floor or in her crib......that got lowered that day. She did that for a few weeks and we had to be careful because she thought she could just throw herself to the floor to sit.....a few bumps here and there. On Sunday we were all in the living room and Danikah crawled over to the ottoman and stood up......I just about crapped!!!! Are you kidding me???? She wasn't even 8 months old yet!! All this in under a month......I was blown away!!!
Last night for dinner ...Danikah ate mashed potatoes, broccoli, and chicken....that I cooked. She loved the broccoli..big time!!!!
This morning I had to get out Lexi's 12 AND 18 month clothes because Danikah needs them. She doesn't even look big.....she measures long though...27 1/2 inches!!! I am in for a really tall kid I think...LOL!!! Lexingtyn is 32 inches and she will be 2 in just over a month!!!!!

On to the others....Lexingtyn is starting to put two and three word phrases together and for the longest time she is was one word at a time. She is getting closer to being diaper free....another yippee!!!

Emma has been doing a great deed this week...her great grandmother is staying with Kevin parents and while they are at work...Emma spends the day with Nana and gets her up....does lunch and plays cards or watches movies.....she says she is having a blast with her Nana. So very proud of her. Haven't seen her much this week but for good reason. Gracelynn has been helping me with the babies and showing us she can handle a little more in respect to responsibility. She is doing good!!!

Oh yeah..Dani's second bottom tooth came...so glad they came after I was done nursing her...she can BITE!!!!

I know Danikah is in a boy outfit in the video per say but dad is a firefighter and we have to make him happy......sometimes!!!! LOL!!!

My girls make it worth it......

Today and last night was a s rough as it gets but through it all...I still laughed and the reason is 4 sweet girls.
Emma kept and eye on the baby this morning (early) so mom could get a shower and then she asked me to move her room a round and she cleaned it all very nice. It was nice time together while the girls were being occupied by a friend of the family downstairs. We cleaned up the whole house and then Emma and our friend Emily took the girls outside while I got a lot of needed things done. I am so tired but stuff needs to get done. They were so helpful. Between Emily and Emma they got the baby to fall asleep and have a nap. I was so happy!!!!
the older girls helped get lunch started, cleaned up all the toys...changed diapers for naps and when it was all said and done....I was so relaxed...awesome job helping me girls!!!!!!
Danikah is still all messed up and waiting to see the Dr on Wednesday is going to be rough.
She isn`t eating well today again but her spirits are not dampened..she is such a happy baby!!!

O n a better note.....we are planning to go away to see family finally after 4 long years. We have a reunion every other year and we haven`t been since 2005 so I am very excited.
Tomorrow is my final exam for my photography and I am looking forward to this part being done. I go back for the next round in the winter. Hopefully I pass....LOL!!!!! By the photoshoots I am booking...it looks good!!!

Before I leave you tonight I do want to thank a few special people that have emiled me directly or posted a comment on the blog. I am overwhelmed at your compassion. Thank-you for your ideas, your love and most of all ....making me realize that I am not alone!!!! It means so much..more than you know!!!

Nicole

Assessment completed today....

I need to back up a few days because they have been such a nightmare I could just scream...I am so tired and apologize for not updating this blog. I know I have people know that are following that I have never met and I am so thankful for your support so bear with me as I get this all out there.
The Ranitidine was suppose to be a bandaid for her reflux and it has caused more problems...Dani was waking up due to acid reflux in the middle of the night ( like 3-4 times to nurse) We started the meds and she started sleeping longer and it was like we had a miracle happening. That lasted a few days and then the problems came. She started waking up more in the night but refusing to nurse and just crying and moaning. I started to notice the longer intervals between bowel movements ( although they were still soft) and then all hell broke loose. The constipation started late last week and I know that it is the meds. The sleeplessness was a symptom and so is the constipation. She is waking up screaming instead of a slow wake up like she used to do. She refuses any food and she just moans and wants to be rocked...eventually falling asleep only to wake less than and hour later sometimes twice and hour. I can't do this anymore, seriously. she won't eat because she is so bound up. I can't give her prunes or any other solids to get it to move because I was told no foods. I tried apple juice and nothing. I cried so hard the other day when she tried to go and I had to assist her and she screamed so hard and held her breath....It was so bad she bled. So now we have no spitting up or vomiting but now she can't poop and can't sleep....did not solve the problem!!!!!

Now to catch up to today.....
Getting ready for all this today was really crazy trying to get four very high strung girls out of the house. I went over to grandmas and dropped off Emma, Gracie & Lexi to play and spend some time with Kevin's mom. Danikah and I headed to the hospital. Every nurse or Dr.in the place stopped to talk to Dani and kept telling her she was very beautiful. A nice way to help mom relax before the big test. Michelle ( our assessment nurse) came out and talked to me about what was going to happen and got some of what we brought. She asked how the meds were working and she looked concerned...not only does the ranitidine cause constipation.....so does the barium test. She said she would try and use as little as possible. Michelle went and added the barium and then a few minutes later ( after 20 more nurses stopped to talk to Danikah) Michelle came back out with her chair and we got started. Danikah did amazingly well for her test. It was concluded there is nothing wrong with her esophagus and she swallowed just fine. The radiologist was concerned about how she swallowed and think it is more of an upper GI problem. We got unstrapped from the chair and went back out into the hall and she threw up. Gagged and everything. The nurse was floored..and was like...that didn't take long.
I tried to give her her bottle before we left and tried to get her home before she did it again. She refused the bottle. To this point the last bottle she had was at like 4 am when she finally ate for me. Now it is noon and she won't eat. we come home and from what I can make from it....she is cramping and screaming in pain from the food and barium. Here we go again.......
She screamed the whole way home. I tried the bottle at home and she refused. She just cried and wanted to be rocked.She calmed down long enough for me to set her down on the floor so I could use the washroom and as I returned she was pushing and trying to go to the bathroom. I ran ,picked her up and had to help her again. I won't even go into how bad it was...it was just bad. She just sobbed on me after and from then which was 2pm till almost 3:30pm she was so uncomfortable. She finally curled up into a ball in my lap and fell asleep and i was able to put her in her bed. That is why this took so long to get on here.
I want my baby fixed...I want her to be healthy and happy, I want her to feel refreshed after getting the sleep she needs. I want to enjoy all my children without feeling like a zombie with no energy. It is summer...we should be out enjoying our time and we just can't because Danikah is in such a bad place.

The part that sucks the most is....she wants food so bad...she cries when we eat and not share. She doesn't see the paediatrician until next Wednesday. Then a upper GI will be ordered, which could take a few weeks and then follow up again.........

How much more does this sweet pea need to endure before they figure it out?
She wants my hugs and they seem to help so I am just going keep doing what works...LOVE!!!!!

Nicole

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!!!!