Sick :(

We could really use prayers right now. First and foremost Amber is sick, she is trying to stay out of the hospital. She has had trace to moderate keytones in her urine. She is in communication with the nurse and they are monitoring her closely from home. Well from my Mom's house. She has a fever that she has to take Tylenol every 4 hours to keep down, it is still 99.7. She has given herself two bolus of Zofran to keep her food down as well. She feels horrific. She really hates taking meds so she is really sick to be taking them like this. The baby is moving around a lot and even kicked Cole's hand. He was delighted.

McKenna has a fever of 102.7 and is lethargic and has the chills

I have a fever of 100 and a very full head and sore throat

Jimmie still has a lot of snot, he has been kinda gaggy, and a few coughs here and there. I am listening to his lungs with my stethoscope (yes I do that) I don't hear any crackling but I do worry about his lungs.

Andrea (my Mom) she is trying to tend to everyone. Mom is not sick but lets pray that she stays that way. Thankfully Justin is home today and I think Rod and Kathy will come out tomorrow to help me.

I know this is not the end of the world but it feels like it. Can I just keep Jimmie in a bubble please!

Love, Rachael

Developmental Peadiatrician visit

Jimmie Recently had a visit with his developmental Peadiatrician Dr. H. I was expecting him to not be pleased with how skinny Jimmie is. Dr. H was not happy about his weight but was very pleased with his variety of diet and how much he eats. He was also pleased at how much he has grown in head circumference and height, He felt like he had made a huge cognitive jump and is not worried about Jimmie getting enough nutrition to feed his brain. He also said he seems to be "caught up" (minus his weight and speech) A huge relief for me. I went in to the appointment feeling like it was D-day.

However he is very concerned with his lack of speech. His language is very good, i.e. he understands pretty much everything we say. It is looking very much like apraxia (the same diagnoses that Amber's daughter McKenna has) Interestingly enough it is not something related to his prematurity. He communicates very well using signs, he has about 50 . He has about 20 words/sounds. but the average person could understand maybe 2 of them. We are moving to speech therapy two times a week. We have 1 hour session, he is not yet two adjusted so his attention span is short, he concentrates and works hard for 10 min out of the hour. I work all day with him on sounds and words. It is just really hard to see him struggle for every sound. He wants to communicate and has a lot to say. In the long run will be OK, but part of me wants to say "give him a break breathing, eating, and talking should not be this hard" I know that we are so blessed at how well he is doing and how much worse it could be.

The big change: Dr. H. wants me to have him involved with peer groups. Jimmie's therapists have been pushing me to do this for a few months now. They think it would really help his verbal skills. I am really trying to let go and not worry about him getting sick. Dr. H said he needs to get sick and build up his immune system. I know this but I really hate it when he is sick ugh. So he will start Sunday School at the end of May (two adjusted) I will try and do play dates with cousins and such. I could really use prayer to let go.

So all and all very good, Dr. H wants to see him in December to start talking about when he turns 3 (gulp) we will lose all of our in home therapist and have to transition to the school district, or private therapy.
Love, Rachael

PS Amber has managed to stay out of the hospital for 3 weeks. She is on the Zofran pump 24 hrs a day (with a few min off to change the site) She is having some anxiety for the next few weeks. They will try weaning her from the pump. If that doesn't work it is assumed she will stay on it for the whole pregnancy. She also has the anatomical ultra sound in a few weeks. Given my history with it she is anxious about that as well. She is having pain in the needle sites around her belly button she is now changing them every 12 hours and it is helping. She is gaining weight just very slowly (sounds like someone else?) She is doing better at staying hydrated and able to eat but is still experiencing extreme fatigue. Her Iron levels are low but they don't want to supplement right now. The supplements can cause stomach upset, she had this side effect from them in the past. The low levels are contributing to the fatigue. Over all she is better.

PPS Jimmie and Amber and her kids are sick fever colds etc.. Pray for them.

4 year anniversary

April 7th is our (Justin and I's) anniversary. This year was the first year nothing horrible was happening. Our first year we had just found out about Gracie and were waiting for our level 2 ultra sound. Needless to say we did not feel like celebrating. Our 2nd year Jimmie was in the NICU. I had no idea what day it was much less the actual date. I was exhausted from pumping around the clock. I don't even remember if I knew when it came. Our 3rd year Jimmie had gotten the G-Tube and was vomiting around the clock. I vaguely remember thinking about it.

This year we were not in crises. Two days before "the day" I asked Justin if he wanted to do a 24 hour get away. He said sure, he did NOT think I would make it happen. He had no idea how much I wanted to celebrate. I called Grandma Kathy, "yep she and Grandpa would love to have Jimmie for a "sleep over" I called the Elms

a beautiful historic hotel about 30 min north of us. Booked a room and told Justin we were leaving tomorrow. He was very surprised.

After Speech Therapy. I took Jimmie over to Grandma and Grandpa Gravitts, and away we went. Boy did it feel weird, we went to Red Lobster for lunch, the whole 24 hours we ate way way to much. We visited a museum and the homestead of Jesse James. (yes the outlaw) We have always wanted to do that.

We saw a movie, and swam in the pool and had a wonderful relaxing time in the hot tub. Oh and did I mention sleeping in? I woke up at 7am not much sleeping in but still an hour longer than what Jimmie will let me do. I then WENT BACK TO SLEEP. We did a little shopping. I should say looking, we didn't buy anything. Took a walk over the grounds of the Elms.

Then went back to pick up Jimmie. I do want to let y'all know I only called twice to check on him, I give my self a pat on the back. I do have to say I was not worried about him, I love my in-laws. Jimmie was napping when we got back. Grandpa said he slept through the night in bed with them. He ate good, and only asked for me once right before bed. He woke up from his nap in a foul mood. I was picturing this wonderful snugly reunion. After all I had been gone ALL NIGHT. Ummm no he was mad, I don't think at me. It took him a bit to come out of the mood. But he was fine. It was a wonderful anniversary.

Love,
Rachael

P.S. Amber is doing better. She has been set up with home health and is on a Zofran Pump. This works by pumping the Zofran in under her skin through a small catheter. She has to stick herself every 24 hours to change the site. However she has started developing painful lumps under her skin so now she has been advised to stick herself and change the site every 12 hours. It's all worth it though because this pump is keeping her from needing iv hydration. She is finally able to eat and drink enough to stay out of the hospital and gain just a little bit of weight. She still suffers from nausea when she moves around too much and when she drives so she still could use your prayers. We are so grateful to have you all praying for us!

Gracie's Day

Today is the day Gracie was born. It's been 3 years! My heart aches with joy and sadness over her life.

I wrote the following on her 1st birthday:

Gracie's foot prints

This video is about the song! The images were just stock images.

Make video montages at www.OneTrueMedia.com

Gracie Anne Gravitt passed away in her mother’s womb Thursday, April 17th 2008. She was born Saturday, April 19th 2008 -- and spent 90 precious minutes in the loving arms of her parents Rachael and Justin, her Grandparents Rod, Kathy, Jay and Andrea, and her Auntie Amber. She was 1 pound 8 ounces and 10 and a half inches long.

Gracie Anne Gravitt is buried at the foot of her Great-Grandpa Gravitt. Her Grandpa Rod said his dad (who had 5 boys) always wanted a little girl. It seemed very fitting to lay Gracie to rest there.

Rachael wrote the following in September 2008:

When we found out how very sick Gracie was I knew inducing labor while her heart was still beating was not an option for me and I received the grace to continue on with my pregnancy. I decided not to go to work and try and be thankful for the time I did have with her. I received a vision from God of a white robe that was the garment of grace and the Lord was holding it out to me all I had to do was take it and put it on. I did, once I had it on it disappeared like water and I was wrapped in grace. I had to keep putting it on. He also told me to name her Grace because that is what he gave me.

“It has now been five months since Gracie passed away and I have good days and bad days. I am comforted to know that I will be with Gracie in eternity and this time apart is so short. I am looking forward to the day I get to see Gracie's face as God created it. I know I will never be the same. My little girl took a part of my heart and I feel her absence every day. What I can hope is that this experience will make me a better stronger person. That is what Gracie would have wanted. She lived so short a time but taught me so much.

Through Gracie God has given me this: that all we have to do is chose to love in all situations. Love our selves, love others, love and know we are loved. If we love, we don't fear, hate, have bitterness, self pity, anger, or envy. The by products of love are Joy and Peace! And I realized that I need to love. I did love Gracie and still do and it is beautiful that God gave me that. If we love in all situations only good will come of it. Nothing evil ever came out of love. When I start to have the negative emotions I remember that I love(ed) her. Just LOVE. This was the verse I used at our wedding it means so much more to me now.

“Love bears all things

believes all things

hopes all things

endures all things

Love never ends”

Much Love in our Fathers Name,

Rachael” Sept. 2008

Grandma Andrea wrote the following for Gracie's funeral:

“Rachael knew that Gracie was a girl because God told her so and He named the babe Grace. Her middle name is Anne. Guess what? That means grace, too. It comforts me that we have received a double portion of grace! She was God’s Grace! God only gives grace to the humble. Thank you, Rachael and Justin for being humble servants of God.

The apostle Paul spoke about grace often. In 1 Cor. 15:10, Paul said, “But by the grace of God I am what I am, and his grace toward me did not prove vain…”

Grace is God’s presence in our lives empowering us to be who He created us to be and to do what He has called us to do.

Thank you for sending us this message through little Gracie Anne. And I give thanks for the hope that our Father will make all things work together for good to those who love him and are called according to his purpose. I have hope that we will be better people because of Gracie’s life. And while Gracie did not get be all that she was made to be in this life, I have the hope that she will continue to become all God intended her to become. And for now, she has made a deep impact on us in a very good way.

Because Gracie’s tissues were so fragile and swollen, the nurse was not able to make the little clay molds of Gracie’s hands and feet. But it didn’t matter to me. I have the impression of her feet deeply set in my heart. And her little footprints have walked all over me and I have changed forever! It is good.

Jesus said, “Let the little ones come to me.” So Gracie Anne lept into Jesus’ arms. And He blessed her saying, “The Kingdom of Heaven belongs to such as these.”

Written by Gracie’s Grandma, Andrea EuDaly.

April 22, 2008”

Grandma Kathy arranged the above with Gracie's little foot prints at the bottom.

I remember driving home from the hospital that Saturday afternoon after Rachael had Gracie. I remember trying to not cry so I could see the road. I had been gone over night. When I got home I hugged and kissed my children and looked up into my husbands face and as the tears welled up I just shook my head and said, “I have no words…” I didn’t and I still don’t truly have words that come close to the reality of Gracie and my experience of her birth, but words are all I have that I can share. Rachael and Justin have a box of little keepsakes from the hospital, they have her ink foot prints and yes- they have pictures that we have decided will remain private. They also have a few ultrasound pictures which we will always treasure as those are pictures of her alive. And we have her spot in the cemetery. Obviously we hurt because we do not have her. We do not have Gracie. Not now . . . We have the hope and belief that some day we will be together. But until then all we have are memories and words.

There are a many memories that stand out for me from the day Gracie was born. Here are the ones I'd like to share:

I remember the picture of a faded leaf they put by Rachael’s door at the birthing center.

I remember waiting in the waiting room surrounded by strangers excited about babies who were being born that day. I remember trying to hide my pain from them.

I remember the ultrasound confirming Gracie’s heart was no longer beating. Seeing the stillness on the screen and seeing Justin’s shoulders slump as he shook his head. And then Rachael looked up and smiled at me through her tears and said, “it’s okay.”

I remember looking around at Mom, Dad, Kathy and Rod and thinking how joyful and exciting this day would have been. And hoping desperately for that experience with Rachael and Justin in the future.

I remember the disappointment that Gracie and McKenna- who were supposed to be only a year apart- would never play together.

This one is hard to explain, but I remember being happy for Rachael that she got to spend the time she did with Gracie while pregnant with her. But sad that the rest of us missed out. I wish I could have gotten to know Gracie even that much.

During the weeks we knew Gracie was dying and after we buried her I remember I didn’t want to leave my house. I remember feeling sick with anxiety about being in public and going to the dance studio alone (without Rachael). And then I remember being so surprised and grateful to God by the strength and grace I received right when I needed it.

I remember the pain and love in the eyes of the people in my life when they looked at me.

I remember the words of prayer, love and encouragement spoken and written by the wonderful people in our lives.

Most of all I remember Gracie. I remember how sad and how wrong it felt that there was no medical focus or concern on Gracie during delivery. I remember the moment she was born wishing that the Doctor or someone would have caught her instead of letting her slide into that big plastic container. I remember how she landed gracefully on her side and how beautiful and peaceful she looked.

I remember being filled with awe at the miracle of life in the moment of her birth. The feeling was much more intense and real then at the birth of my own live children.

I remember thinking how much bigger she was than I thought she’d be and how beautiful and precious she was. (She looked so much like Jimmie.)

I remember going out into the hall with Mom and Kathy after her birth where Rod and Dad were pacing and waiting. I remember their faces searching ours for any response or news. I remember Kathy walking into Rod’s arms, Mom walking into Dad’s arms while I slid down to the floor with my head in my hands and wished David were there with me.

I remember Rod and Dad going in to see Gracie.

I remember my Dad’s face as he held her.

I remember Justin’s face right after she was born.

I remember tears, everywhere, continually.

I remember Justin and Rachael giving her up and watching the Nurse walk out of the room holding her.

I remember the blanket they wrapped her in and the hat they put on her head.

I remember thinking that my cousin’s (Camilla) bridal shower was starting right when Gracie was born.

I remember that evening taking a walk with Dave and feeling that there was a wide chasm in between us of this thing I had just experienced while he was home taking care of our kids. I remember trying to use words to bridge the gap.

I remember the world looked, felt, smelled and sounded different.

I remember not being able to fathom that I would have to cook dinner that evening and clean the kitchen. I couldn’t wrap my brain around how life would go on.

I remember my son asking me why.

I remember knowing I would never be the same and being grateful and sad at the same time.

I remember Gracie’s tiny coffin.

I remember everyone’s faces at the funeral.

I remember walking into what would have been Gracie’s room.

I remember feeling close to God, in touch with the Eternal and knowing without a doubt that the Lord does draw near to the brokenhearted.

“My Grace is sufficient for you, for power is perfected in weakness.” 2 Cor. 12:9

We are sad today Gracie. We miss you so much. But there is also joy in remembering you today on your birthday. I will never ever forget being with you that day you were born. I will never be the same for looking at your beautiful face and being touched by your life. You will be in my heart forever. We miss you and we love you and we will see you again.

God is good.

Love,

Amber

trucking along

Sorry about the MIA again. This is Rachael writing (I know gasp) I just wanted to update.

Amber is still very sick. She finally saw an OB today. She needed fluid and had an elevated heart rate because of dehydration. Last I talked to her they had her hooked up to IVs They found the baby on the ultrasound. It looks great. She will be going back to the Doctor on Monday to set up a long term care plan. She will be 12 weeks at the end of the week. Please continue to pray for her. She sounded upbeat and relived that the Doctors would be watching her closely. My Mom has been taking care of her and the kids. Amber’s good days are laying on the couch not feeling nauseated. Bad days are laying on the couch feeling nauseated and vomiting.

Last week We (Amber and I) were supposed to visit out dear friend Amy in Vancouver Canada. Jimmie ended up getting sick along with Ambers two children. Vomiting, fever, that kind of thing. We cancelled the trip. We were very disappointed but knew with the kids being sick it would be no fun. Turns out Ambers health went way down hill (see above).

Jimmie came though the sickness very well. He is 100% better now. I don’t think he lost much weight. We are going though a little rough patch with the sleeping, He decided to do the behavioral puke thing again. It only happens when I put him down. So Daddy gets to take a turn with the bed time routine. He is still sleeping about 11 hours at night in his crib and about two hour naps. This morning he was looking outside doing his unh? unh? I look over at him in his high chair he was making the sign for sun! He wanted me to talk about how the sun was coming up. I love that kid! He is still having a hard time speaking but is trying to say more things. I will leave you this this recent picture. It really captures Jimmie's need for movment!

Blessings, Rachael

MIA

So sorry! I've been missing in action the last few weeks. My life has consisted of dry heaving, ER visits for iv and then dry heaving and more dry heaving. I'm very excited to be 8 1/2 weeks pregnant, but not very excited AT ALL to have been diagnosed with "Hyperemesis Gravidarum". That big fancy name basically means- severe morning sickness. UGH!

Anyway-- Jimmie is truckin along doing great! Rachael texted me this hilarious picture of the goofy smile he's pulling lately.



Jimmie is still sleeping really well through the night in his own bed in his own room. He's eating pretty consistently and gaining weight (just slowly) as always. He's working hard in speech therapy. All signs still point towards Apraxia. It's a little early yet to know for sure though...

Tomorrow Jimmie will be 25 months old! Rach and I have decided that we will do 4 developmental birthday letters this year instead of 1 every month. So the next big developmental letter I will write to Jimmie will be May 11th. My plan for the blog this year is to post once a week with a picture and an update for the week. If I'm unable to do that perhaps I can talk Rachael into doing it. (-:

Thank you for your care and prayers for Jimmie!

Love,
Amber

Video Montage

Here is the tribute I did for Jimmie's birthday!

Photo and video editing at www.OneTrueMedia.com

We are singing it from the rooftops! Our precious Jimmie is 2 years old!

Love,

Amber