What One Year means...

One YeAr, 12 months, 365days

This year has meant everything to me it has truly been the most challenging and amazing year of my life. I  discovered so much about life, love, and myself when my tiny 5lb 6oz beautiful girl came into this world of ours. I have always thought of myself as a caretaker of others and someone who loves deeply. After becoming a mom I realized while that was true, I learned that all of my care taking of family and other people's children really couldn't prepare me for my own, I learned that you could feel a deeper love then I could have ever imagined possible. This feeling is so powerful and yet can at the same time make you feel so powerless. Motherhood is an absolute roller coaster of fear and courage. 

This year has meant learning how much love and support I have from wonderful family and friends. I learned that while it seems silly you actually love the other people in your life more as I would watch them interact and fall in love with my daughter. This is especially true of my husband. Having children can really be hard on a relationship however, I feel so blessed in saying that it has truly made us stronger. From the moment we learned ainsley was on the way my husband has been a true hero! We've made a great team and I know we were meant to be on this journey together. 

This year has meant learning about things I never wanted to learn... Lessons about food allergies and sick kiddos. Trying to learn as much as possible about a confusing rare diagnosis. Learning that FPIES doesn't come with straight answer no matter how much to try to learn. Learning to let go of control when you want to so desperately cling to it. Learning watching your child be sick or hurt is the worst thing in the world.  Being one also means that we have to be more brave then ever. It means we can no longer avoid top allergens and the docs say we have to try. Courage can be so difficult to have when it feels like the courage you need can cause devastation. I hope and pray that one year was enough time for me to have the courage I need now.  The courage to put my faith in the Lords hands that he will protect my daughter.  I am trying to have the courage to believe that even in failure there is success and will move us forward to a "normal" eating schedule for Ainsley.  (Update- we gave you your first "dose" of milk this morning. We are Praying so hard all goes well)

One year has meant more absolute joy then I ever though possible as well. This little girl lights up our world. We laugh more, experience more, smile more, and love more then ever before. For now our family feels so complete. Watching her experience every first has been such a blessing. I have spent everyday for one year with my daughter and I am beyond grateful for that. I would replay every bit of this year over and over if I could. This year has changed me, made me a better more loving, strong, and selfless person.

This year you've changed so much Ainsley Kaye. From the moment you were born your dad and I loved you so completely. You've always been so small and yet so strong and that has stayed the same. We love who you are, and everything you will be. Watching you grow has breathed new life into our home, hearts, and spirit. Happy one year sweet girl! We can't wait for So many more with you!!

Triumphs and Trials

Trials

Well the last couple months have gone by in a blur once again! I really felt like we were hitting a stride with Ainsley's food journey and getting some great foods to pass. However, in the last few weeks we have had to take a few giant steps backwards. She had full  FPIES REACTION (learn more about FPIES through the link if you'd like) to eggs, which wasn't a terrible shock, and then to Quinoa, which was she had eaten Quinoa "cereal" multiple times taken breaks and came back to it never an issue, in fact she seemed to sleep better her bowls seemed more normal, no indicator it was something to watch. Then I gave it to her one morning and BAM two hour later while we were out at a museum of course -puke city. The one silver lining I can find in her last couple reaction is that they have seemed to be less severe. She still vomits to bile, but our pediatrician gave us zofran to give her and I think it helps a lot. She isn't dry heaving as much and doesn't seem to get as lethargic! So that is great! It is such a backwards confusing world when food the thing that is supposed nourish your child becomes a poison to them. Eating is supposed to be simple and come naturally. Lately for us, it has been a nightmare. So we are on food detox.  For the last three weeks Ainsley has been strictly nursing. I am again very grateful that we are still able to nurse and yet even that I question. Is this really okay for her? Are the foods I am eating really allowing her gut to heal or could it be making it worse with out us really knowing it. On top of that worry it is becoming more and more obvious each day to her that we are holding out on the poor thing and it is getting frustrating for us all. I truly hate to be so negative. However, right now it is just hard- plain and simple.

With that said- I really do hate being so negative and want to switch gears. I feel that we haven't been trialing foods quite right. I stumbled on a blog, Better Together. She has really done a great job providing her knowledge and experience with her daughter's fpies and offers other resources as well. I feel like I got some good insight and am going to try some things differently and see if that will help. I am truly doing my best to remain hopeful and praying we can make some more progress in Ainsley's relationship with food.

I truly wish other children did not have to go though this or for anything similar. Any mom of a child with any types of food allergy knows how difficult it can be- and yet I am grateful that their are others. Having a child with issues like this can feel so absolutely isolating. However, I have been so blessed lately to meet or learn of other moms who are struggling with many of the same trails and  hardships and also all the amazing things that come along with raising our sweet babies, and that is a triumph!


Triumphs

As I said before the months are flying by, and while we have had some trials the triumphs have been even greater!!! Ainsley continues to get more beautiful, sweet, and sassy all at the same time. I love her little personality and watching is shape- I will admit though there are glimpses of a diva creature that scare me a bit haha. However, she makes me smile every single day. She bring such joy to her father and I every single day! She really is growing and thriving even with the struggles with food. She is hitting so many exciting milestones including WALKING! Well, stepping anyways she usually gets in 2-4 before she decides to fall back on her bum and that crawling is easier. She is really beginning to say things that resembles words including -hi, aaaao (hello) bye, daa(dog), momma, dadda, and she points to things with her eyebrows raised  and says dat? - its the cutest and I will eat her.

To sum up this blog this Quote seemed fitting... we are learning from the hard times and we will continue to cherish the good because there really is so much good!

Hope

9 Months.

My Ainsley is 9 months- soon to be 10 already!! I love this little girl and watching her change and grow is my favorite! She is such a joy. She really is so sweet. After an absence from each other whether from nap time or mom's getting ready she is always ready to give me big hugs and snuggles when she sees me. The way her little face borrows into my neck makes this mom thing, and the challenges that come along with it, completely worth it! Those little snuggles, her two "toof" smile, and watching her continue to thrive and grow give me hope. 

 
 

Hope and FOOD-

The process with Ainsley's Food search is SLOW however, it really is going well. I really do consider us to be so blessed. We have made it through 6 offcial trails since her diagnosis and of 6, 5 foods have worked. The 6th, peas, was just questionable not a horrible reaction either. So that is really encouraging and providing this momma with some hope as well.  At almost ten months old five foods to be able to feed your child may seem like nothing but it is a BIG deal. We have some fruit, veggies, and Quinoa now which is GREAT! Lots of good protein in there. Some fpies children can be over one without ANY safe foods so again I FEEL BLESSED! We have to continue working through and doing our best to find more and more things for her to eat and I am just praying it keeps going as well as it has. We have yet to trial more grains (other then rice and oats-which are triggers) eggs, and dairy. These are big players in food so those trials will be coming up soon. Am i nervous- YES, am I hopeful-YES! So we will have to see what the future brings. I have had a few days were I felt really bad about all of this of course it is so difficult. What I wouldn't give just to give my daughter a taste of my food without hesitating. To not be afraid she will pick something up off my floor, or from another child.Wondering if I am doing this right- how much should she be eating safe foods everyday- do I Mix safe foods in while trialing a new food, I am letting my fear control opportunities for her to eat...  Those thoughts do creep in and can be consuming but, I really am trying to live in our success and just do the best I can each day. We are doing our best to live in a hopeful place.

Hope and Family

We are so blessed with amazing family and friends. It is so nice to know how many people love and support us. Ainsley is such a loved little girl. I am so grateful for my little family it is everything and because we have each other we have hope of living everyday to the fullest and enjoying every moment as we raise our little girl!

Our FPIES story...

My Tiny. 

Our Little Ainsley has always been healthy, strong, and tiny. She has always been under 3 percentile however, it has never been a real concern as she is hitting all her other milestones. At our 6 month check up Ainsley had dropped slightly off her own tiny growth curve. So the doc told me it was time to start solids and she would expect her to jump right back up where she needed to be. Up until this point she had been exclusively breastfed. I entered into the world of solids with hesitation. I just always had a feeling this was something to be cautious of. However, I chalked it up to just not wanting to let my baby "grow up" and started of course with the recommended infant rice cereal. 

What is Normal? 

She seemed to be interested and actually kind of like it. I was excited okay, maybe this wont be so bad. It might be fun especially being able to let daddy participate in feeding more. However about two hours later after we played, and nursed. She vomited. Not like baby spit up but a real throw up. Of course it made me nervous, and I thought well maybe she is just not ready. So I waited a few days and tried again. Same reaction. So I said, okay no more rice. We went to Oatmeal infant cereal... same thing. I couldn't remember in all my years of childcare ever seeing this. I remember thinking hopefully her system is just not ready and it's not an allergy thing. I looked for answers- sometimes google is your friend. I found my answer grains were actually quite hard to digest and the docs were "quacks" for still telling people to use those first. I remember feeling relief- okay this is normal. Her system just isn't ready for grains. So we moved on to veggies and things seemed to be going quite well. We used the try and food for 3-4 days then would move on to the next veggie. When I tried banana for the first time. The vomiting returned... hmmm it's probably because it is store brand and her system is ready for the citrus acid that is used to keep it. Then after a break while trying veggies we came back to sweet potatoes. She ate, we played, she nursed. It was a crazy day as our dog was sick and we were trying to leave for a trip- I put her down for nap ready to get things done. I heard an odd noise I turned around to see she had vomited everywhere, and she wasn't done. I ran to her picked her up to try and get her out of the mess. Great. Sick baby. Just what I need. I gave her a bath thinking like her other vomiting spells it would be over. However, it continued and continued for HOURS the poor baby was puking every 10-15 min. I called my pediatrician, the nurse informed me a flu had been going around and gave me instructions to keep her hydrated. Okay, this was normal. It's just a flu. I can get her through this. It was a hard day. She was so sick and so exhausted and lethargic from the experience. However, by the end of the day it seemed we had made it through and she was nursing. We went on our trip and we took a break from foods for awhile while she got better. Then a couple weeks later something happened that I knew was NOT normal! 

Ainsley was now 8 months old, the never ending comments on how TINY she was had really started to bother me. We had been struggling with this solid food business. I never felt right about it and seemed so stressful. I would get questioned from friends and family whose intentions where loving- why isn't she eating more. You need to just let her try more things. She won't choke. Just do it. I had started to get more brave about things when I had an apple I would give her a taste or put things in the mesh feeder. One morning I went to give her sweet potatoes. Something told me loud and clear- DON'T FEED THIS TO YOUR BABY. I didn't listen. Instead I listened to all the comments of how I was babying her too much. How TINY she was... I needed to feed my baby I needed to get over it she would figure this out.... I fed her and WHAM she got the "flu" again. The exact same thing that happened a couple weeks ago, happened again. She ate, she played, she nursed and went down for nap and soon was up vomiting. This time was even worse. The poor baby was so lethargic I was terrified. I was about to take her to the ER when one last big puke(After 3 hours of constant puking) seemed to "bring her back to life". We were in the bathroom she threw up in the sink and then looked up in the mirror and waved at herself. It melted me totally and completely. My poor, sweet baby. I thought the last time she had this "flu" she had eaten sweet potatoes that morning too. This was not normal...

FPIES

I called my pediatrician again. I told the nurse I believed we were dealing with some kind of food allergy and wanted to make an apt right away. Once again I stopped all solids and turned to my trusty friend google. I stumbled on something called FPIES. Food Protein Induced Enterocolitis Syndrome (f-pies). The reaction described what was happening to my little Ainsley exactly. When I went to the pediatrician she confirmed what I thought, and referred to a gastrointestinal, and allergist specialist. I felt grateful that our care providers did seem to know about FPIES because I had read so many other storied where parents spent a very long time being told-it was reflux, or normal... when clearly it isn't. We got the official diagnosis this last week for Rice, oats, banana, and sweet potato based on her history with these foods. There are many scary parts about FPIES, the worse being you really can't test for triggers. IT is a non IgE allergy and therefore the only way to know is try. As a mom, a person who is supposed to protect her baby from things that could potentially harm her this is terrifying. On one hand she needs to find safe foods and things to help nourish her body and help her grow- yet those things could also be potentially toxic to her body. 

GOOGLE is not Always your Friend

So like any mom out there I continued to search for "answers" where do I start.. How to I go throught this and nourish and protect my baby. While there were many blogs and things that could be very helpful when it comes to recipes and how to live everyday life with a baby with severe allergies... there are also many stories that a parent starting this journey SHOULD NOT hear or read about. FPIES is SCARY there are more mild cases (I am PRAYING we will fall into this category) and really severe, terrible, awful ones. I started to worry fiercely about the future of my sweet girl. I felt as if I were drowning...Suffocating in this life that could be.  Until my sweet husband saved me... he saw me flailing and gasping for air. He helped remind me that we are not there. That every FPIES child is different and we can only take Ainsley's journey day by day. He reminded me we need to be grateful and live in our successes. 

It's only the beginning. 

We have begun our first official food trial with carrots and it seems to be going well. So I will live in that success. I will live in my sweet girls smile, and happy demeanor through all of this. I will be brave, and strong for her. With the help of my loved ones, sweet husband, and a GOD who I truly do believe knows and loves  my daughter and HE can help guide me. This journey has only just begun and through it I must remember...

A is for Ainsley and...Allergy.

I am so completely behind on updates on the little, I have kept track of milestones and done a monthly write up on other media sites but to quickly catch up here is a look at Ainsley month to month..

Ainsley is now 8 months old going on 9 this month. She is really so much fun right now. She makes me laugh all the time. She is so spunky and joyful. She is in a mimicking phase so we shake our head, she does it. We dance, she dances. We sniff, she does. It is too cute! She also started crawling and she now pulls herself up on everything. I love that she is so tiny but still so strong, but she REALLY keeps me busy now!  I absolutely love this growing girl.

While this month has been so filled with so many wonders, it has also been one of the most challenging for me, since she was born. It isn't because she is fussy from teething, or waking up during the night. These things I can take on, these things I can still feel I can care for my sweet girl with love and patience and get through them. The hard part has been watching Ainsley truly suffer due to illness.

Today we were officially diagnosed with FPIES.  Here is some info

Food Protein-Induced Enterocolitis Syndrome (FPIES) is a type of food allergy affecting the gastrointestinal (GI) tract.  Classic symptoms of FPIES include profound vomiting, diarrhea, and dehydration. These symptoms can lead to severe lethargy, change in body temperature and blood pressure. Unlike typical food allergies, symptoms may not be immediate and do not show up on standard allergy tests.  Furthermore, the negative allergy evaluation may delay the diagnosis and take the focus off the causative food.  Nonetheless, FPIES can present with severe symptoms following ingestion of a food trigger. (http://fpiesfoundation.org/about-fpies-3/) 

This is some scary business. Right now our trigger foods include; rice, oats, banana, and sweet potato. As stated above we cannot test for these allergies so we basically have to try foods and pray that it wont be toxic to our sweet girl. It is terrifying to say the least. Our last reaction Ainsley was so sick and lethargic at one time I looked at her, and it was as if my baby wasn't there. Now I do have to say while scary, and trying as this my be. I KNOW there a momma's out there whose littles have had it much worse and from much earlier on. I am so grateful that we have been able to breastfeed and can continue doing so and we don't have to fight to find a formula that she can tolerate. I am grateful that she doesn't seem to have reaction to the food I ingest through my breast milk, as other kids do. Some of the FPIE stories I have heard are absolutely horrific. I pray for those babies and mommas. No child should have to suffer. While I am at it I pray for all the children and parents of those children with other serious disease, or ailments that effect their daily lives. What an absolute sadness I feel watching my baby hurt and I wish so badly I could endure this for her. I pray for the parents of kids with even minor allergies, because what a struggle I'm sure it can be. I pray for ALL the parents of every child, because why not? No matter your personal circumstance being a parent is so hard for so many reasons. I pray to thank my Heavenly Father. While through this trial I KNOW it could be worse, I know there are so many other things that could be happening to me that others are going through and I am grateful for so much and most of all I am just  grateful for this amazing little girl she is my absolute greatest blessing. 

My gift, my blessing, came to me with this. There is a reason I am her mommy and I have to believe that I can be there for her in every possible way. To say that I feel overwhelmed is an understatement. Will I be able to listen to my instincts to help protect her, probably not all the time. Will I be able to be "creative" enough to make things to help cater to her so she never has to feel left out, not always. Will I be able to tell her every single day how special and loved she is... absolutely! While the journey ahead feels daunting in this moment, I know I can do this. I can be strong for her, and love her day in and day out. I can try my absolute best every day, for her. 

I will probably share more of her "fpies story" another time. For today I will end with this.... 

The First Few Weeks

The First Few Weeks

At the hospital in was a learning period for us all. We had to learn or relearn all the basic care needs for this tiny tiny baby. Everything went well for our little Ainsley in the hospital except that her blood sugar level was low at first. They supplemented with breast milk from a bottle. It came back up to normal and stayed normal the rest of the time but sadly this meant it had to be tested before every feed. Which meant a hill prick before every feed.  It was so sad. Then the poor thing had to get a test for blood levels where they had to draw blood from her hand. OUCH L After all that we were both given a clean bill of health and on Monday the 28^th we were able to take our beautiful girl home. As we drove my mind was filled with all the wonderful ideas, this beautiful picture of my new family. It was all going just as I had imagined, Jay was curious but kind. Ainsley peacefully slept and Brandon and I just watched her in awe- wow she is really ours. I had told the moms that we would probably just do our own thing the first few days and figure out this parenting thing on our own.  Then the night came…

 My milk came in and it was a nightmare. I was so swollen and engorged Ainsley could not latch. We were up basically all night trying to figure out how to feed this poor baby. Finally I pumped but the bottles we had were literally bigger then her face.  I was frantically texting my mom hoping for help. She reminded me my sister in law had to spoon feed her baby milk. So we tried that and it worked she was finally able to sleep. I called Brandon’s mom the next morning and asked her to come as soon as she could. So much for a plans to do this on our own. Thankfully she came and brought different bottles that would work. The next few days was filled with trying to figure out the feeding thing it was more hard and frustrating then I could have every imagined. Finally at the advice of a friend we found something that worked and feeding became a much better experience.

During the first few weeks we had a few more medical hiccups. Nothing terrible, just a spat with jaundice. Sadly that meant more doctors visits and more heel pricks. She had to be on the lights for awhile but after that it was all cleared up. We also had some fun times we celebrated her first holiday, Halloween, and she made the cutest little Minnie Mouse there ever was. We also celebrated mommy’s birthday. We were lucky to have grandmas come help out when daddy went back to work.

Brandon was able to have a decent amount of time off after we brought little Ainsley home. It was a wonderfully joyful period filled with a lot of learning and lot of hardships. However,  I can say being a parent is truly the most wonderful blessing. We experienced a love we had never known for our daughter, and our love for each other only grew. We really had to work together and rely on one another to figure it all out. I know that I could not have done it without the help of my amazing husband.

We love you Ainsley and these first few weeks only solidified that. We can’t wait to watch you grow.









 

 

 

 

 

 

 

 

 

almost one month....

A Baby Story

On Thursday October 24 2013 we went into the doctors’ office to get a check up and ultrasound. According to our last ultrasound we knew the baby was small but there wasn’t a real concern yet. So we were doing another ultrasound on this day to check on her growth. As the tech took us through we were once again mesmerized by our little girl. At the end of the ultrasound the tech said "well everything looks good she is tiny but she looks good"… So I asked how tiny, was tiny. She then told us she was still only measuring at about 33 weeks gestation.  I was at 38, my heart sank I knew then that the doctor was going to induce me. She had said that was a possibility but I really didn’t think it would come to this. Why wasn't my baby growing, why wasn't my body enough? When the doc came in , sure enough , she was ready to send me to the hospital that day.

 I had really hoped to have the most natural birth  possible. I researched and planned. We spent money on a doula that would help Brandon and I reach this goal  and it seemed I wasn’t going to be starting on the right foot. I was upset, nervous, and scared. Would I be able to have the birth I hoped for? Would my tiny baby be okay. In my fog of nerves and questions I was able to think straight for one moment. I asked her if she would strip my membranes and give me a little more time to go into labor on my own. She agreed but would only give us until the next evening then we were to come in and get induced.

As we walked out I held Brandon’s hand feeling a huge range of emotions. One of those emotions was an excitement that we would be meeting our sweet Ainsley very soon. Another stronger one, was I enough? My body wasn't working now, growing my baby properly- why would it be enough come time for labor?

I was glad my sister had stayed with us and I had someone to be home with me while Brandon finished up the work day. Kylee and I went to the mall and walked and got special teas and sat on exercise balls, and did a lot of things to try and start labor naturally. Unfortunately none of that worked. So the next day, Friday, Brandon stayed home from work and we walked and talked and rested.  Brandon lovingly reminded me to rest that day, he reminded me I was in for a lot of work and I needed to not exhaust myself just trying to go into labor- because I would be that evening whether I was rested or not.  We waited until 730 when we were supposed to call the hospital.  When it came time to leave for the hospital we were both so nervous. We just hoped everything would go okay.  We hoped we would still be able to have some control over labor and that our baby would be alright.

We were admitted around 9pm started to make things happen. Right off I was disappointed to find out that once they started administering the medicine I wouldn’t be able to get off monitors which meant I was stuck to the bed. This was hard as I had envisioned being able to walk, move around, use the tub, and other methods of distraction for the pain that was to come.  They gave me a pill that they hoped would start my labor but that didn’t work so around 4:00am they started the pitocin. It was a long night of getting checked and rechecked and adjusting the medicine to get a consistent pattern started. Around 9am contractions were getting very consistent. I felt like I was doing great breathing through them, hopefully making progress... They checked me and I was still only at a 2 so the doctor said she wanted to break my water to try and get things moving. We agreed knowin our doula was on the way and hopefully it would start to pick up. 

They turned up the pitocin and broke my water and I could not believe the pain that came after this, and how quickly it came. The first few contractions were so intense and they were only getting worse fast! I was so completely shocked and overwhelmed. I thought it would be gradual I was doing fine with the other contractions. My plan went out the window, I was completely beyond reason- I quickly made the choice to get an epidural. I was shocked by the pain and knew I wouldn’t even be able to focus on the amazing event about to take place I was in so much pain. Unfortunately it took a long time to get mom comfortable. Luckily daddy and our doula were there to help me get through the hour of intense contractions until finally the THIRD time I received an epidural it worked.  He gave me a large dose and I finally felt much better! They checked me and I was a 4 so the nurse said it would be awhile and they would check me in about 4 hours. So I settled in ready for a little nap after what had been a long night and morning. However, before I could really even get some rest the nurse came back and said my doc wanted me to be checked again.

When she checked me her all got big and she looked at me in shock and said you are at a 9 and your baby is very, very low. She asked “are you not feeling this” I looked at her with a shocked smile and said “nope”.  After another hour it was time to push. Pushing was a long process for me. I was so pumped full of meds and my labor went so quickly I really wasn’t feeling what I needed to in order to push effectively.  They anesthesiologist came in and turned my medicine down a few times. By the time little Ainsley was born, I felt everything. Which honestly, was okay with me. There were moments the pain was unbearable. There were moments I thought, why did I want to feel this. Couldnt they just do a c-section that seemed like a much better option at this point. Finally I felt my body completely take over and do its job, it was really an amazing thing. The doc told me to slow down and not push... I started laughing... I wasn't pushing, I no longer had control but in the best way.  Finally after almost two hours the doctor said to me “Brianne get your baby”  so I reached down and grabbed under her arms and pulled her up to my chest.

I was completely overwhelmed by this tiny person suddenly dependent on me. She was so quiet they took her quickly to check her. I was concerned-why wasn’t she crying. When I heard her first cry I cannot explain the joy that came through me and completely consumed me. She settled down quickly she just didn't want to cry she was quiet and sweet and oh my goodness beautiful. She came back to me and we quickly started a feeding and she latched right away.

This tiny 5lb 6oz beauty was just so ready to be in this world and entered it at 446pm on October 26, 2013. She was struggling inside me, she had stopped growing the way she needed, the cord was around her neck. Yet, through all this she was born completely healthy. There was no nicu visits, no extra time. My tiny girl was perfect. After she fed my husband held our daughter for the first time. He sat in a chair with her and cried, he fell head over heels in love. In that moment my love for him grew as well. He was an amazing partner, and coach throughout the labor. I really couldn’t have done it without him. He was so attentive, supportive, and loving.  He applies all those things now with our daughter he is such an amazing dad.

What a blessed day.  We love you so much Ainsley Kaye.