Delayed Birthday Wishes

As often happens life got the best of me and blogging took a back seat but alas here is an update :) We are slowly fitting D into OUR lives and not allowing it to RULE them. CJ is still honeymooning, meaning her pancreas is giving it one last hoo-rah before finally kicking the bucket. This can leave us quite the roller coaster since although her body is still making some insulin there is no way to measure it and lows have become quite common. We lowered her dose of Levamir (long acting insulin) and it seems to have done the trick for now, as a matter of fact her numbers were so wonderful yesterday we didn't have a single low or a need for any fast acting insulin! wwohooo Lows can be quite scary as the consequences are sobering and can happen rather quickly.



I really can't get over the change in CJ since her Dx. As sweet as she always was she is even more so now that her sugar is regulated (pun intended, ok ill spare you all the corny D jokes sorry lol). She was always tolerant of others but would always prefer Mommy hands down, now she will go to nearly anyone and has become quite the Daddy's girl. She had taken two steps prior to hospitalization but has since decided walking just isn't for her although the past few days have found her quite a bit of bravery and she will stand on her own, but as soon as she realized what she is doing its fight on our tush we go. Looks like mommy's requests to not grow up are finally being heard.



She has also had quite the language explosion, I find myself comparing her to Mr. Chatterbox a little too often but she is quickly catching up. She can now blow kisses, along with a few other signs such as "up", "more", and wave. Now we have added "bubbles", "dada", "nana" (Aiden), "uhoh" "ewwww" and smoother dance moves then her mama.

not particularly in focus but here's a smooch from Miss CJ herself



We also picked up her Medical Alert Bracelet



The 17th was baby girl's first birthday and the 22nd her party held at Squad 1. Her dress was made by the fabulous Jae! And you can find her sewing skills being put to work here




she quite enjoyed her cool-whipped cupcake



We will have her First Birthday Shots done by Monica of Angel Eyes Photography but I couldn't help but shoot a "rough draft" of Cj in her tutu!



I want to give a special shout out thank you to "the owls" who send me this beautiful necklace, a lovely journal to keep CJ's log in, and the money to but her pump pouch. As of now I only have a picture of the necklace but the rest will come soon.



Aiden has become quite the comedian and a day doesn't go by where he can't leave me in stitches



here is "getting this job done" a phrase only close family can find the true humor in but take my word for it, a cherished moment none the less



He's also taken quite an interest in sports and can throw up a baseball to hit it clear across a room! Something I can't even do if you must know, guess it's safe to assume those skills come from his Daddy. We bought him a t-ball set and Daddy is looking forward to setting it up with him tonight.



I have since picked my knitting back up, a task I was surprised to find quite difficult since I couldn't help but associate it with her dx as it was what I was doing when the doctor came in to sit beside me on the bed. But alas I overcame it and have been hard at work and will have pictures to share in the next few days as the things I wash and block today dry. The congo we have been working on is finally opening on June 5th and I couldn't be more excited! Stay tuned for updates and sneak peaks!

Niki

Thank you doesn't feel like enough ...

I don't want to share names and such since I don't know how much personal information these people would want shared on the internet but it was too much of a blessing not to bring attention to. And to be honest I just don't feel like a thank you will suffice for the kindness and love our family has been shown by these amazing people but I just want to thank each and every person from Squad 1. You have walked beside us through all of our family's ups and downs and I never quite understood the relationships forged by a volunteer fire department until you all came into our lives. You are all truly part of our family and we are eternally grateful for the love you've shown us and our sweet little girl. That being said ... OUR BABY GIRL IS GETTING HER PUMP!!! I can't say it without tearing up because I am just so excited for her. I can't tell you all enough how strong she has been through all of this never once changing her sweet and cheerful disposition. However, nothing breaks my heart more then feeling her body clench up, although without a spoken word of resistance, when she feels Eddie or I pinch her skin in preparation for an insulin dosage. I am so grateful for technology and knowing that my baby girl wont have to know that pain every day!

CJ's numbers have been honeymooning like a pro! Her numbers have stayed in the 100s-200s with minimal doses of novolog. Oh how I could get used to this, but I am aware that this is only her Pancreas's last ditch efforts. It is also a bit nerve racking watching her numbers creep so close to the 100 mark since low's are oh so dangerous. We are only to give her .5 units of novolog if her sugars are 180 and above at her pre-meal checks, but on occasion her numbers have been 183 or 189 and then it becomes hairy since .5 is the smallest dose one can accurately give with a syringe BUT if she doesn't nurse or eat her next snack properly it can send her into a low. This my friends is why we are so excited about the pump! With the new Revel my Medtronic you can give dosages as small as .025 units of insulin! So those carbs in 5 goldfish crackers we would have to hope wont send her into a low with the novolog can be calculated into her pump sending her the perfect amount of insulin for he little body! Almost like an algebra deficient electronic pancreas all her very own, not to mention it comes in pretty pink! If any of you care to take a peak at this snazzy piece of machinery here it is ...

http://www.minimed.com/products/

and a video explaining all its wonderful abilities

And with that I'll leave you all with a little snippet of lyrics that have touched me over the past few days ...

Erin O'Donnell-Hold on to Jesus

"Hear me dear Jesus,
rock this little one to sleep
keep her close when she's scared, and
give her grace when she is weak.
I know she'll stumble, but i know she'll make it through
if you hold onto just like you said you do
hold her Jesus so she'll hold on tight to you"

Better then a Hallelujah

God loves a lullaby

In a mothers tears in the dead of night

Better than a Hallelujah sometimes.

We pour out our miseries

God just hears a melody

Beautiful the mess we are

The honest cries of breaking hearts

Are better than a Hallelujah.



Those that know me know that song is the way to reach my soul and how my soul needed to be touched by this song. Had a rough night on Saturday but as sobering as it was it reminded me that my God is still beside me regardless of how I show my faith. That being said I have a few THANK YOU's to share ...

Last night we got news that Brite Medical (local pharmacy) has offered to give us CJ's med/supplies at cost of insurance! meaning no copay!!! *sobfest number 1* Mind you these are complete strangers who got wind of our situation through the fire department and all I can say is GOD IS GOOD!

Today my dear sister Dani and friend Brittany presented me with an amazing gift! They organized a pool from family and friends and presented us with enough money to cover the Diabetes Education class that our insurance will not cover AND more to put towards CJ's pump. Each and every one of you who donated have touched our lives and our hearts so deeply that words can't do the thanks we feel justice. *sobfest numero dos*

I have so much more to share but considering we need to leave the house at 8am tomorrow for the Diabetes Education class at the Molly Center so I'll leave you all with a little bit of cuteness :)

Adjusting to our "New Normal"

I can't imagine the tone of this posting to be all the pleasant because I feel myself sinking into the bitter and angry phase of the mourning process. We arrived home yesterday around 3, I can't tell you all how amazing it was to have my sweet little boy all mine again. I hate what this disease is doing to my time and relationship with him and it's only been a week. I hate seeing him so confused as to why Mommy needs to give CJ this juice NOW and why he can't eat "that" because it will make CJ jealous and it will cause her sugar to skyrocket. I'm sure sleep deprivation is making me that much more emotional and lacking the patience to offer Aiden the explanations and understanding he deserves. That being said he has been such an amazing big brother distracting Cara with tickles, giggles, and blowing raspberries while I check her. Still haven't allowed him to watch us give insulin since he is a very observant albeit sensitive little boy.

Eddie went back to work today and I had to handle my first low on my own ... 3 hours later my hands are still trembling. I hate that I even have to ride this roller coaster, I know being angry isn't going to solve anything but it sure does feel good right now. I hate that my poor little girl needs to go through this, this stuff happens to strangers on the internet, not my little girl. It all feels like a really good book that you just can't put down but you know that once you close that book it's all going to go away and reality will sink in ... well not this time. Coming home was probably one of the scariest parts of this whole situation, I did not feel even close to that nervous bringing either child home for the first time. The reality and responsibility is just terrifying. We were visited by a home nurse this morning who reassured us we are doing a great job but it wasn't the least bit consoling. Also had to go and order CJ's Medical Alert bracelet and was somewhat surprised to find myself on the verge of tears telling the jeweler what needed to be engraved. I know one day I will be able to speak the word "Diabetes" without sobbing in front of complete strangers but for now misery loves company so welcome to my pity party ...

Diabetes 101

We were transferred to the Peds floor Tuesday afternoon and CJ was freed of all her IV/wires YAY!!! It's been a bit of a whirlwind since then with doctors/ dietitians/ nurses/ geneticists etc in and out of the room and with CJ back to her usual happy cheery self it's been hard finding the time to sit down and give updates. We have plowed through many books/pamphlets/and handouts and have each mastered testing her blood sugar and giving insulin. Those of you who are parents, remember the day you brought your first child home and you longed for an instruction booklet to tell you just what you were in for ... well CJ now has about 60 of them! lol I have to say that Eddie has been so strong and such an amazing Daddy I can't thank God enough for giving me such a rock to lean on, he has been there to take the first step time and again and give me the reassurance that I CAN do this. There have been a few tweaks and adjustments made to CJ's meds and there have been both highs and lows while try to determine the best regimen to control the diabetes. We are a bit of a different case since breastfeeding doesn't allow them to measure her intake of carbs and therefor cant calculate the insulin needed to compensate for them quite as easily. She was started with 4 units of Levamir which is a long acting insulin that needs to be given daily. Turns out 4units is just too much for her little body and we had a few scary lows the first day in PEDs but praise God we were able to control them through breastfeeding alone. She is not that comfortable with the sippy cup or bottle so giving juice to bring her out of lows when BFing isn't enough is going to be a challenge all it's own, I'm praying that since her hep-lock was removed last night along with the splint used to keep it positioned she will be feel more comfortable using them. She is also to be given .5units of Novolog (her fast acting insulin) when her blood sugar is about 180, we had a few numbers in the 300s last night but since a low is more dangerous then a high especially at night time hours we didn't adjust anything but starting today she will be given .5units of Levamir before bedtime to avoid that. I know that sounds like a whole lot of gibberish to many (and it certainly would have seemed quite foreign to me a week ago) but God has put some awesome mamas with children diagnosed type 1 who do understand all of this, in my path recently and they have proven to be a wealth of resource and support. We sat down with the Medtronic pump rep yesterday who is actually the brother of Molly (of The Molly Center) and we will most likely be heading in that direction, just awaiting word on how much of the $8,000 pump insurance will cover. Obviously we are a bit overwhelmed by the cost factor of CJ's condition as just 7 out of the 10 RXs we picked up yesterday were $120 ... for a 30 day supply. Not to mention even if the insurance company were to cover %80 of her pump cost that would still leave us with about a grand to pay out of pocket. I am trying ever so hard to keep my faith and remember that the Lord will provide, reciting to myself Proverbs 3:5-6 constantly. The few Sundays before CJ's diagnosis our Pastor had preached on Jobe and I truly believe God made sure that teaching was in my heart going into this, knowing that bad things do happen to good people and that this is not a punishment but simply something He knows we are able to handle. We just ask that you all pray we can keep our faith strong in spite of the roller coaster to come because I am sure that as long as our faith is in Him alone we WILL make it through! I also want to say a big thank you to the "owlies" who have been there to remind me of His teachings and words when things seem so overwhelming, know that you have provided me with more strength through Him then I could ever muster on my own!

one day at a time ...

we seem to be hearing a lot of this phrase from both doctors, nurses, and friends alike. I have yet to meet a mother that takes her child's life one day at a time. A mother dreams of her child's future and abilities, the experiences she will have and the person she will be come. Never does she imagine those experiences to include injecting your child 5-7 times a day with insulin and checking her blood sugar that much more. I don't use exact numbers because I don't even have knowledge of those yet so i guess ill just take one day at a time huh?

CJ's sugar has come down to a normal level (normal for those on insulin drips is around 125) and she will be taken off the IVs shortly. We will be leaving the PICU soon and heading to the Ped's floor for a crash course in Diabetes and the care involved, we will be there until about the end of the week. We med with Dr. A and Dr. P who are her Pediatric Endocrinologist and Geneticist respectively. Our next mission is to determine the cause of the diabetes so we can assemble a short term and long term plan of attack and management. Eddie and I, along with Aiden will most likely undergo genetic as well. We also had a visit from our pediatrician who I can't thank God for enough. Those of you who know we've been kind of hopping back and forth between pediatricians since our beloved holistic on stopped taking insurance. After much prayer and deliberation Eddie and I have decided to put the worries of cost aside for now and work through that as the time comes, but it is of more importance to us that we have a pediatrician who is on the same page as us and will help us achieve the care and lifestyle we want for our daughter regardless of her diagnosis. The intensivist we met with on our first night here showed us very quickly how unsupportive of our lifestyle habits he was i.e. non-vaxing and breastfeeding past the age of 1. I understand we are now playing with a new hand of cards and we will be re-evaluation our vaccination (or lack there of) decisions since CJ will be living will a compromised immune system from here on out. Also since diabetes is very rare in children Cara's age the intensivist prefers to match their insulin to a perfectly portioned meal intake encourages bottle feeding be it pumping or formula. Here is where our gratitude for the blessing of our pedi comes in ... him and the endo are both very supportive of our goal to breastfeed to 2 and believe that it is worth the extra work and guesstimating it might involve in regards to her insulin intake. Our Pedi is also planning a sit down with us once we have her sugars under control from home to scrutinize which vaxs might be beneficial, a conversation I feel completely comfortable having with him as we are both on the same page and he is currently pouring over books to help us find as many holistic treatments as possible for CJ now and in the future. He is one of the leading pedi's in the area (well pretty much the only) to investigate and question the use of vaccinations and was not only tolerant but supportive of our decision to not vax so again it is such a blessing to have him on our side.

Cara did experience her first low today (along with her first taste of juice) which was a bit scary for me. Since one of her arms are bandaged into a splint to keep her IV in place she was not able to hold the sippy cup she finally accepted on Sunday, and being a control freak like her mama she wanted none of it. I had one of those moments where it dawned on me that I am not going to have an IV to adjust at home should she refuse our attempts to raise her sugars via food/drink. It scared the crap out of me quite frankly. The numbness is waring off and the reality of the situation is starting to hit me in waves, I'm sure the learning process and the experience of checking her sugar/giving her her first injection will be a reality shock all it's own. Daddy has already mastered checking CJ's sugar and as bittersweet a situation as this is she is developing quite the bond with Daddy whereas when home it needs to be Mommy Mommy Mommy 90% of the times. In fact she woke up half way through this poast and has been playing with Daddy the entire time! A miracle all it's own! I can't say enough how happy we are to see CJ back to her sweet and cheery self. The doctors can't get over what a happy and social baby she is demanding high fives from every one that walks in the room and showing her boo-boos to the ones she comes to love. I have taken a few pictures over the last two days but for some reason blogger is not giving me the option to upload them ... if anyone can help me figure this out it would be great as I'm not sure if it's the internet connection or what not causing that. Until then I'll upload them to FB :)

God made our sweet CJ ...

a little too sweet

late last night CJ was diagnosed with Type 1 Diabetes.

She had been battling a yeast rash/infection and thrush so I wasn't all too concerned about her discomfort/irritability Saturday. We had given her some tylenol the night before, her first dose ever and of course we awoke to a recall! Went hiking, more like a short walk to check out the stream and fish hatchery, in Manor. The poor baby was just so overtired and miserable on the way home we stopped at a convenience store to pick up some tylenol to get her through the ride home. It was promptly thrown up but I was unsure weather it was from the crying or possibly the tylenol. She threw up three times total that day.

Sunday Morning. Those of you that know CJ are aware that she has not stopped moving/wiggling since conception so you can imagine my alarm when she listlessly lay around showing little interest in her favorite toys/activities. Did however get her to eat some blackberries which coupled with vomiting led to the destruction of my brand new bed set. At this point I was getting concerned and called the pediatrician. We discussed the homeopathic ways we had been treating her rash and agreed that if her condition was the same/worse by tomorrow we would bring her in to be seen. As the day wore on she became more and more lethargic barely able to pick up her head. Now I'm away a sick baby is often a lethargic one but this was so far from the norn I couldn't help but be alarmed. Called the pedi back and was sent to the ER assuming she was dehydrated and in need of some fluids. This is where I was baffled because she was urinating and nursing fine considering. I couldn't give a very accurate comparison of her wet diapers to those she usually has since we had picked up a few disposables to use while i stripped the yeast out of our cloth. We figured there might be an underlying infection and some fluids and antibiotics and we would be on our way ...

Arrived at Hackensack Hospital around 7:30 and were placed in a room withing 15 minutes ... then it was another 2 hours before a doctor made their way over to see us. Was not a fan of the doctor she was distracted and brash ... made us feel as if we were wasting her time... perfect personality to be employed in a pediatric ER huh? Blood tests were ordered and IV's administered. The test results proved CJ's blood glucose levels to be above 400 and she was spilling keotones into her urine. We were told this was possibly cause by the stress of a virus/illness. Well God certainly placed his hand into the mix and sent the cold doctor on her merry way due to a family emergency and replaced her with a wonderful and kindhearted doctor. The minute she walked into our room and sat beside me on the bed my heart began racing ... doctors do NOT sit down and level with you like this over mild dehydration. At this point the possibility of diabetes was mentioned but not given much serious thought. Then the three letters that changed our lives came into play ... DKA. CJ's sugar levels once retested were 580, she was spilling large amounts of keotones into her urine and headed into severe dehydration. Insert 5 million question and overwhelming guilt. We were transferred to the PICU and personally escorted by the "nice" doctor. Here we met with our wonderful nurse Danielle and Dr. P the intensivist. We were told that CJ indeed has Type 1 Diabetes.



I will follow up with all the thoughts and feelings at a later time but right now I have not been able to sort through them myself. I am still numb and counting on God to carry me through this until I am strong enough to stand on my own two feet. After a day spent trying to stabilize her sugars we will be send to the peds floor tomorrow for the schooling of our lifetimes. With that I need to get a little sleep and will edit this for typos in the morning