Amelia's Journey

3/25/15

Posted on March 25, 2015 by Jasmine Lopez

Its been over a month since I wrote in my blog. At times I feel like I don’t have a reason to write anymore because Amelia isn’t here and my life is now fairly boring.

In all reality I’m still very much hurting. I still feel lost as ever and I hurt all the time. There’s nothing I can do because I’m doing everything I can to remain sane.

I do want to thank my fiancé for being the best supporter even if he doesn’t realize it. The both of us are so similar but so different in many ways. I’ve learned that everyone grieves differently and not one way is better or easier then the other. Everyday I just wonder what our life would be like if she was here with us. And everyday I wonder if we will ever have children again. Its a VERY touchy subject for me as a women but I know that I need to be strong and God will be bless me in many ways. I also want to thank my mother for being there for me even when its just to listen to me ramble.

I truly believe I am a better person because of Amelia and I can not wait to continue to work on me and who I am becoming.

Jasmine

2/21/15

Posted on February 22, 2015 by Jasmine Lopez

Being that this coming week I will be 7 week’s post C-section and now I can slowly work myself into the gym and start working out, I figured I’d spend this snowy Saturday making a fattening traditional Hispanic dish…. “Rellenos de papa”… If you are Hispanic then you definitely know what Rellenos de papa is but its also know as a “Potato ball” and you usually see them at cuchifrito’s (yes unfortunately we don’t have many in Upstate, NY).

I posted pictures of the steps on my Facebook (https://www.facebook.com/Lovee.Jasze)

Anyhow… The finished product is… (drum rolllll) 🙂

2/12/15

Posted on February 12, 2015 by Jasmine Lopez

Well well well…. Where do you start?

I guess I’ll start by saying that life is absolutely crazy (both good and bad). I am officially back at work and it’s hard to even fathom that I’ve been back for a week already.

I was in the shower last night just thinking to myself how fast things happened after Amelia passed away. It seems like such a blur… as if it never happened. Now thinking back I feel like after I returned to the Ronald McDonald house the day I was discharged from the hospital my head was somewhere else. It’s like that chapter of my life quickly ended. I went from hanging out in the dining area with my mom, Naidalee, and Joseph (a mom and her son that we became close to) to going into labor the next morning, having a c-section, 3 days later returning with no baby, packing my things quickly and heading back to NY. When I say fast I mean it all happened FAST. It seems like it was a dream that quickly ended and BAM I’m back home, I’m back to work… mentally I don’t even think I’ve processed everything. All I know is that on January 6, 2015 I gave birth to a beautiful little girl named Amelia Jade, who came out screaming, chunky, and full of life. From the looks she gave me to the kisses I gave her. The best three days of my life.

Sometimes I have this urge to question why did this happen to Billie and I but I’ve truly been gaining a better relationship with God and I know he should not be questioned on those things. I don’t blame anyone for what happened to my daughter because it was a genetic issue and there’s nothing anyone could have done to change our genes. I am a firm believer that everything happens for a reason and with that being said I’m not sure I want to know the reason. I’ve learned that you take what’s thrown your way and you can either choose to be negative or positive. God has been my saving grace and the only reason aside from Amelia that I have been able to remain sane.

I do want to inform everyone that I will be closing down the CareFund page. I will be doing so sometime this weekend or early next week. We truly appreciate all of the donations and support and want to thank everyone most importantly because the money raised was able to help us pay for Amelia’s funeral costs and give us a nice jump start to purchasing her headstone. Now that I’m back at work I am able to continue to put money aside for her headstone and by the time the weather is better her stone will be done and ready to be set.

Other than that I have been just dealing with life day by day and appreciating everything that I can. Yesterday was a testimony that things are moving alone as the doctors at CHOP called and said Amelia’s genetic testing results were in and now they are going forward with me and Billie’s testing. So…. Wish us luck… these results are a key to our future!!!!

I do want to point out something though. I feel like people have been acting weird around me when it comes to the topic of children or pregnancy. I understand that people are probably trying to do so out of respect for me but in all reality it makes me really uncomfortable. If you ask anyone that speaks to me often I openly speak about Amelia, her situation, and what I went through. I have nothing to hide and my daughter is not a secret. When it comes to pregnancies, children and anything “baby related” I do have feelings behind it but those are MY issues that I AM working on. All in all I am a mother whether my daughter is here or not…

AND LASTLY SINCE I AM CLOSING AMELIAS CAREFUND PAGE IN ORDER TO FOLLOW MY BLOG FOR UPDATES YOU WILL NEED TO SUBSCRIBE VIA WORDPRESS…

https://ameliajohnson04.wordpress.com

1/23/15

Posted on January 23, 2015 by Jasmine Lopez

Wednesday was the first day of midweek boost 2015 at church… I love Empire Christian Center. It just gives me life and allows me to gather my thoughts in such a non judgmental, spiritual, blessed,comfortable atmosphere. Im learning so much about the lord but the best part is I’m learning so much about my relationship with the lord. I’m proud of where I am today and what my future holds….

I’m not even sure why but for some time now I have been telling my mom and most recently I’ve told Billie that I’ve been having this feeling that I need to bring people to God. I’m not entirely sure what that means yet but I’m sure interested in finding out.

Today 1/23/15 is only two weeks that my baby has been gone but we feel her presence daily. Amelia and my faith keep me strong. My pastor said I don’t look like I’ve dealt with such a traumatic event such a short time ago. I’m sure they know but I couldn’t do it without my faith, and the love and support from my church ECC and temporary church Epic Philly, our friends, our family, and all of our supporters.

I think there has to be some good made out of every situation so that we can help others and give people hope… The same hope given to me when I was searching night and day for answers and support. The same stories I read that gave me hope and a piece of mind so I can sleep at night. I want Amelia’s story to be heard and I know she will be remembered for being the fighter she is… That’s why we gave our daughter a fighting chance and she proved everyone wrong and shocked many doctors doing things they said she wouldn’t do (increasing her amniotic fluid, making it full term, breathing on her own)…

Billie and I want you all to know we are doing ok… We are maintaining best we can given our circumstances and remaining positive.
2015 has several doors opening up for all of us and I can not wait to see what is in store…

God bless
Amelia J. Mommy loves you punkin baby.

One of beautiful pictures from our maternity shoot… Thanks Laura!!!

1/15/15

Posted on January 15, 2015 by Jasmine Lopez

So today Billie and I laid our baby girl to rest. I feel so much better being that she finally made it home from out of state. Of course this was a very emotional time for us but I feel so much more comfortable knowing we have a place to visit Amelia.

Prior to the burial My mom and I were able to go to the funeral home and dress Amelia, put her jewelry on her, and put a few keepsakes in her casket. I want to thank my mother for coming with me to do so. We were able to privately say our last goodbyes to her physically. Amelia looked so beautiful. At first we didn’t know what to expect because they say when infants get embalmed it tends to change their appearance BUT that wasn’t going to stop me. Well when my mother and I got there we were so happy that Amelia looked just as we remembered and quiet honestly she looked like a porcelain doll. Amelia just looked peaceful and beautiful is the word that just describes her best… After that we met with the rest of Amelia’s immediate family at the burial site. I felt that it was probably best to give everyone their own moment to say what they wanted then Billie and I would go last. My mom bought white roses for everyone and Billie, my mom, and I also placed Lilly’s as that’s the flower that was placed on Amelia’s door when she was passing away.

I was nervous at first on how today would all play out because I wanted nothing but perfection for my little girl but it went well…

Amelias in a better place and again I am very much feeling better now that she’s home.

Next step…. Purchasing a head stone.

I want to thank everyone for their continued blessings, prayers, and wonderful words during this hard time. I also want to thank everyone for respecting our privacy as well. We never in a million years thought we would be burying our daughter but everything happens for a reason and never once should you question God.

Amelia Jade Johnson

Posted on January 10, 2015 by Jasmine Lopez

On 1/6/15 Billie and I introduced Amelia Jade Johnson to the world. GOD blessed us with a little girl who quite honestly favors the both of us very well. Amelia is such a good mixture of us both that she was diagnosed with two genetic disorders Arpkd and GA II. We were aware of the Arpkd but found out about GA II after 24 hours of Amelias birth. After much research, testing, a blood transfusion and preparation for dialysis we found out there was no cure or treatments for GA II that Amelia would be able to handle being that she needs healthy kidneys to help her get better. And with the Arpkd she does not have healthy kidneys to assist with that….
On 1/9/15 GOD gained another angel. Amelia put up a great fight and was able to maintain her own heart rate and breathing without any medical assistance until her last breath. We do not want anyway to feel bad or sorry for us because Amelia passed very very peacefully and without struggle in her parents arms. We truly feel that God allowed us to meet our guardian angel which is something many people can not say they had the opportunity to do. We have many pictures and videos of our beautiful Amelia and will eventually share some when we are ready. We want everyone to remember Amelia as the beautiful little fighter that she is.

We are asking that everyone respects our privacy and allows us to deal with this difficult time in private.

We love you Amilly always and forever!!

Below is a picture of Amelia snoring like her daddy.

Happy New Year 1/1/15 !!!!!

Posted on January 2, 2015 by Jasmine Lopez

So its the New Year officially!!!!!

I am so grateful to be 37 weeks as of yesterday…. The doctors at stupid St. Peters didn’t think me and Amelia would make it this far- Oh how we are proudly proving them wrong. I had an appointment yesterday 12/31/14 and they did the usual ultrasound and prenatal appointment. Amelia’s heart rate is 134 and her amniotic fluid level was at 12.4… As of current my weight is 185 which is CRAZY but at least I am not gaining as much as fast as I was a few weeks ago. The midwife checked for Amelia’s position and of course she is still breeched with her head up. The midwife also checked my stomach where she sort of squeezed my daughters head and butt it felt like. Amelia and her daddy did NOT like that. It felt weird to me but this is what they have to do at this point. The doctor also came in to review our ultrasound results with me and my mom and she states the same thing… There’s obviously kidney function if she has continued to keep her fluid level in the normal range as well as her lungs are fully developed as she is considered full term this week. The doctor also states Amelia is making a statement. My mom asked the midwife to estimate Amelia’s weight at the time of birth and she said about 7lbs or so which is a great weight according to the doctor. Shout out to my mom for helping me remember all the questions I think about through out the week lol where would I be without her? I cant remember ANYTHING smh 😦

I’m excited and my nerves are starting to decrease as I get sooner to my C-section date. I’m excited to meet my baby girl. She is so blessed and so loved by many. This little girl is my everything and I know that she knows it already because she continues to thrive and do well. I’m just waiting for the real journey to start when she enters this world because she is going to give her father and I a run for our money lol. We are ready though.

My next and last prenatal appointment is on 1/8/15, then on 1/13/15 is my pre-op appointment, THEN 1/14/15 is the big day!!

See you all next week!

Ephesians 3:20 says, “Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us”

Translation: “God can do anything, you know – far more than you could ever imagine or guess or request in your wildest dreams.”

God is doing amazing things out there I promise!

12/24/14 Christmas Eve… 36 weeks

Posted on December 25, 2014 by Jasmine Lopez

So it’s Christmas Eve…. I’m excited because I love the holidays but it’s bitter sweet because I’m away from home. I feel bad and kinda low because I have my mom here with me which means she isn’t allowed to enjoy her holiday’s with her husband, my brother, and her babies (Lacy & Lola)… On the other hand I know my mom wouldn’t allow me to go through this alone either so it’s a catch 22. I appreciate my mom so much, man I don’t know where I would be without her. This is also the first Christmas away from my love Billie.

Today I had an appointment and Amelia is still breeched. Her fluid is also down from 14.8 to 12.8… Heart rate is still around 138. It was discussed how there is still time for Amelia to move into the correct position but for now the doctors picked a c-section date. I have my projected date to beeeee….. 1/14/15. Now this date is only projected because she can come earlier if she chooses OR if I go in on 1/13/15 for pre-op and she’s no longer breeched they will cancel the c-section and allow her to come on her own (original due date is 1/21/15). Everyone is absolutely amazed with Amelia’s progress. I said to my mother that 10 weeks ago doctors at St. Peter’s were not hopeful and when I came to CHOP for the first time they were optimistic but very unsure of what the outcome would be. I’m such a strong believer that God is here with us. I know he has been all along but it took some tragic news for me to reevaluate my relationship with God. I’ve always carried God in my heart but I’m at the point in my life that I know he’s with me at all times and constantly on my mind.

I can just feel it in my heart and soul that Amelia will be ok. I wish I could take this all away from her and give it to myself. I’m very proud of Billie and I because all we have asked from day 1 was to be treated normally. We never asked for pity and always keep our heads up high. I couldn’t have picked a better man to have children with. With the both our of strength in values and beliefs I know Amelia is already a tough cookie that no one will be able to crumble.

Well my next appointment is on 12/31/14 to get the usual ultrasound and doctor visit. Then the count down begins… Our baby will be here soon.

12/18/14 35 Weeks

Posted on December 18, 2014 by Jasmine Lopez

Where do I start???? So much has happened and I want to share a few pictures… If your going to read be prepared to be sitting here for a few minutes lol

Not sure why I didn’t post this BUT on 12/6/14 I went to see the Nutcracker with my mom. She surprised me and somehow found one close by seeing as we couldn’t go to the one back at home. I had a wonderful time as did my mom. It was exactly how I remember from when I was a little girl…. My mom also met the comedian Carrot top. He was at the will call to get his tickets as well. Here are some pictures…

Here are some pictures from when Billie and Scott were here and we went to the aquarium… Billie and I are big kids at heart so please rest assure our daughter will be having so much fun because we are always looking to do fun things (even if we are the only adults there lmao)….

Clearly in the pictures you can see who the brave one is (Billie) and who is not (Me). I did touch the shark though 🙂

We also took a couple “Christmas pics” lol

And with the family!!!!

(IDK why we are all standing so far from each other)

OK. Now on 12/15/14 while at lunch one of the staff members here at the Ronald McDonald house asked me if I was interested in going to a Phillies basketball game. I said “sure why not”…. She explained that there are 4 tickets for tonight’s game and she was going to ask another pregnant woman and her mother… I said “Ok” (side note: they are our neighbors and we speak with them and eat meals with them all the time so we were happy) I got the tickets, set a time with the other family on when we should leave to the stadium and when we got there we were shocked. It was a suite/ sky box, it was catered, and such a beautiful view. It was perfect. I really wish Billie would have been able to come. After that Billie, Amelia, and I will need to look into attending a game in that style. It was awesome. So here are some pictures from that night….

AND LAST BUT NOT LEAST….. My medical update:

I had my weekly appointment on 12/17/14….

I was a little nervous because last week Amelia’s fluid went down from 13 to 11 and I really didn’t want to hear that it went lower. It didn’t help that everything was delayed and my appointment was an hour behind BUT anyhow we got inside and come to find out Amelia’s fluid is now up to 14.8… I weight 179lbs LMAO… Amelia’s heart rate is again a steady 138…. AND she is still breeched…. My baby is ringing in at….. 5lbs 4oz. WOOOOHOOO. I could not have gotten better news. The doctor came in and said “I am very optimistic that Amelia will come out screaming (Which means her lungs are developed), and given that she continues to produce fluid there is evidently kidney function, AND predicting we will not be in the NICU long…. maybe a few days to get her situated with doctors at home” …. She also said that she has seen children not have end stage renal issues until ages 7-10 where getting a living donor kidney transplant would be more ideal because it would fit better…

I mean come on… GOD IS GOOD.

Keep us in your prayers because God hears them and we are being watched over.

Thank you lord.

I will be most likely going FULL TERM (or as close as Amelia decides to go to 40 weeks) and probably a C-section but we will see.

Next weeks appointment is on 12/24/14…

12/10/14…. 34 Weeks

Posted on December 11, 2014 by Jasmine Lopez

I guess I will back up a few days….

On Sunday 12/7/14 I was expecting my moms husband Scott to be in town for a visit from Sunday to Wednesday. I was excited for my mom because I really hate that I require so much monitoring which means I’m the reason so many people have had to alter their lives. Again I was excited for my mom because I know how it feels to be away from my fiancé and I know she is a tough cookie and doesn’t show it but I know she misses home, the dogs, my brother, both her jobs, and of course her husband Scott…. Earlier in the day I was a little upset with Billie because he didn’t tell me he went home the night before. I overheard my mom talking to my brother on Saturday saying Billie was home washing clothes especially when he was texting me saying “hey just got to my moms from work” (he has been staying at his moms house since I’m not home)… I didn’t mention anything to Billie but on Sunday I sure enough did. He got a little upset asking who told me that and I truly thought nothing of it aside from “BOY JUST TELL ME THE TRUTH…No reason to lie about silly things”…

So around dinner time my mom said Scott just called and he is downstairs so she would be right back (everyone needs to be let in with a key). I was just like “OK Ill be here in bed doing nothing as usual”. I ended up chilling for a little while looking a HOT mess. My hair was all crazy but IDC. All of a sudden my mom opens the door and I swear I looked right past Scott and saw MY BABY. Billie came to visit me and omg I was excited. I really really really missed him but kept telling him not to waste his paid time off and just wait until Amelia is born to use it but I cant tell you how grateful I am that he came to visit because it is so hard to be away from him being that we spend so much time together and we are really close. I was also excited that he can attend my next appointment because he has never missed Amelia’s appointments but since having to go home he has missed a few.

Now fast forwarding to 12/9/14…

So today I had a simple doctors appointment that only included my weekly ultrasound. Apparently they changed my schedule so I didn’t get my prenatal appointment today… That will be next week. The ultrasound was going as usual when I asked again (to a different ultrasound tech) if I can get a 3D sonogram. The tech was awesome and stopped what she was doing and started to play around with Amelia to see what she can get me… We were able to get some images but Amelia’s hand was in her face and she was sucking on her fingers. Finally she was able to get something and When I first saw the screen my heart dropped. It was as if it was all becoming so real. I finally had a face to add to the name Amelia. All this time all I could do was imagine what my daughter would look like but at that very moment I fell in love all over again. In my head I said OMG look at that nose… She looks just like Billie lmao. Then I said it out loud and everyone started laughing. Every hope and dream I had of Amelia looking like mommy disappeared lol which is fine because she will have my attitude, my drive, and my fight…. Which will all drive daddy crazy anyway.

After that the tech finished the ultrasound and said the doctor will review it and come in to speak with us. A few moments late the doctor came in and said everything is still looking well. He said the fluid is still at a good point. This week is was down to 11.5 from last week being 13.6 (or something around that). I’m sure my fluid intake may have played a role in the decrease (I didn’t do well with water this past week) but the doctors insist it has nothing to do with me and its Amelia that creates the fluid.

Overall I had a great last few days. I’m sad Billie is leaving tomorrow morning but he has to work because we still have bills and have to upkeep our home for Ms. Amelia to come back to… I’m super excited to say her name and speak about her and have the vision of her little fat face but I’m also nervous that this pregnancy is coming to an end soon which means LABOR lol. I know everything will go well and soon everyone will meet our little girl… our fighter….

Well until next week!!!!! 🙂