Our Sweet Jemma Jean

Like I said in the begining SHE IS FIERCE!!!! She is progressing with a lot of her milestones at her actual age. She is maybe a little tiny bit behind on a few things being between her actual age and her adjusted age. For those that don't know adjusted age considers her due date of April 12th as the age to compare to what milestones she should be achieving not her actual birthdate of Jan 14th 3 months early. We are so proud of her.

                                      Look at the sweet girl and how she has grown.

Jemma and me, Nana

                                                    Jemma, Lisa, Francis and Cody

Jemma Jean

                                           Jemma                                                                    Jemma and sister

 

A day to remember, October 15th

On this day all around the world candles are lit to remember our precious babies gone to soon. Last year I lit a candle for my sisters twins, Gloria and Selena, my fathers twin and all the other sweet babies in our family that never got to take a breath. I hoped and prayed that I wouldn't be lighting a candle for Jade's twins. Unfortunately this year my white candle had a name on it. As I thought of the other babies my precious Jewels name glistened in the light. I had a hard time going to bed that night because I didn't want to blow the candle out........

 

 

 

 

 

 



Breaking the Silence
 

October 14, 2013

Here is my post on facebook on oct 14th,2013

Jenni Mallory Walker

October 14

Jemma Jean Devasure-Lynes is our miracle baby. She now weighs 17lb 8oz and is 27 in long this has put her in the 25th percentile for her actual age that's right our sweet baby is healthy. The cardiologist is not going to see her again until... jan and they are going to do her open heart surgery sometime next year. We have been blessed by this sweet baby who is such a fighter. Her twin sister is her special guardian angel watching over her. Thank you Jewel we love and miss you.

 

Auntie Monique was at a NICU rememberance event that day and released a butterfly in honor of Jewel.

For You Jewel Marie

 

They say...

They say time heals all wounds BUT the loss of a child or in my case a grandchild never heals. Our family has really struggled with the loss of Jewel at times unbearably so. Having our sweat Jemma brings so much joy to us but there is a fear still of losing her that forever lingers in the back of everyone's mind. Sometimes we verbalize this fear at other times we push it so far to the back of our minds it festers like poison. There is never any guarantee that a baby will survive the trials of childhood and when that child has medical issues sometimes thoughts of loss can be overpowering. We love little miss Jemma Jean so much with every inch of our being we all fought so hard to get her here the loss of her would be ultimately crippling of our sanity.

A picture speaks a thousand words 4/2013 to 7/2013

T
The blanket made of Jewels clothes that are identical to Jemma's

 

 

Jewels heart pillow it weighs the same she did at birth

Angels on earth....

Little miss Jemma is doing great she is growing great on June 7 she weighed 10lbs 8oz and was 23 1/2 in tall. My best friend Lisa has let them move in with her and is helping Jade make it through the times of colic. The cardiologist is still waiting to do open heart surgery until Jemma gets bigger. Doc says there is no reason to do it while Jemma seems to be thriving.

Miss Jemma and Auntie Lisa at Jemma's baby shower May 5th 2013

And it doesn't get any better.....

Little miss Jemma is now 8 lbs 3 oz yep that's right she is growing like a weed. She got to go home a week after her first angioplasty. Surprisingly she did very well in Tahoe. We took her to meet her new pediatrician the day we got up there and O2 saturation was 98% which was excellent. She has continued to thrive. Unfortunately last week when she came down the hill for her cardiologist appointment we learned that her pulmonary stenosis has worsened and that it actually extends into her arteries. She is very close to critical levels of pressure in her heart and the doc said she is not allowed to return home to Tahoe it is too much work on her heart up at that elevation. So in jade and her little family moved with me. Jemma is going to have another angioplasty in 3 weeks( they can't do them to close together) to try to give her heart a chance to grow a little more before they do the open heart surgery. We were devastated by this new but we are pushing onward enjoying every minute with our sweet little miracle baby. I will update you when We more

I spoke to soon

Yesterday at 7 in the morning I posted on Facebook how excited we were the time had come to take Jemma home. My aunt Laura took the carseat By the hospital so they could do the carseat challenge. It is a test to measure a baby's ability to handle the stress of being in a carseat. Believe it or not a lot of babies don't pass it and end up stay a little longer. Jade was so excited she took it down to the NICU wondering when can we start. Unfortunately we won't anytime soon the horrors stories of the NICU roller coaster ride have just become our own. We are on a downward spiral upside down hands in the air screaming at the top of lungs stop this ride please when is this going to stop,

Jemma has been diagnosed with a very severe pulmonary stenosis. This is a birth defect of of her pulmonary valve inside of her heart. They are moving her to another hospital to do a procedure on her heart. They hope to be able to correct it with a balloon an catheterization however the cardiologist believes it is to severe to be corrected by this method. We are possibly looking at open heart surgery. The transfer should be happening this morning and as soon as we are updated on when all of this will happen I will let you know.

The thing that is keeping us sane is this saying by Shakespeare

Drum roll please....the news we have all been waiting for!!!

Jemma gets to come home on Friday march 8th. And I will say it again SHE IS FIERCE! Her gestational age would be 35 weeks. Her NICU stay will just be 3 days short of 8 weeks. So yes that means she is almost 2 months old. She weighs 4lbs 12oz, can you believe it? Time flies!

So all of this week they have been D/C all her lines. She has been eating all her meals from a bottle for a week now and her NG tube got removed last week. She has also been off of O2 for almost a week. And they believe she is ready. We are so thankful to God for this miracle baby and all the strength he has givin her!

Jemma Jean free of all her tubing 3/3/13

Growing like a weed....

Jemma Jean 2/17/13

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Little Miss Jemma is a little over a month old and is doing fabulous. She now weighs 3 lbs 12 oz. Yep that's right she has gained 2 pounds. She is also just on a nasal cannula for oxygen support. She will hopefully be moving to a NICU in Reno so she can be closer to her parents. Jade and Jaycee are living in a trailer at the hospital and it isn't easy. Thank God for making everything better. Jemma's NICU stay has been uneventful for such a premature baby. We have been blessed! I actually got to hold her for the first time on Sunday Feb 17th and it was amazing. Here are some pictures taken that day and today.

She is fierce....

I am sorry I haven't had time to stop in and update I started nursing school the week after our precious little one was born and I haven't had time to finish my other posts or add a new one.  But here is a little summary of how the journey has been going....


Jemma Jean is one fierce little miracle. Her time in the NICU has flown by. She has done amazing she now weighs 2 lbs 12oz. yep thats right she gained a whole pound. Yeah Jemma. She is 30 weeks today and 3 weeks of that being out here with us. Except for the incident because of the UVC she has had no problems. She has done better on the outside than she did inside. Thank God they delivered her. God has blessed this baby and I am grateful. The doctors are saying that they believe she will get to go home in about five weeks. Please continue to pray for her.

Here are some pictures that share some of the story until I have time to update again!

To be cont'd..........

One day old

First Kangaroo Care at a week old.

Mommy Daddy and Jemma

Me and Jemma

A birth and a funeral...

I can easily say that the last weekend was the hardest of my life. Jemma was having such a hard time and it was so evident on the monitors. On Saturday night one of the residents came in and told us that not only the decels were concerning but now little Jemma was having a flat line heart rate. She said that if it continued we would be delivering. What this means is that when a baby is in the womb their heart rate jumps around their baseline creating a variability.  For example Jemma's baseline was 155 and would go down to 149 then back up. Then it would go up to 160 and back down to 155. This is good and what the doctors want to see when they are monitoring baby. What Jemma was doing was just staying at 155. This is a sign of distress. Dr. M-H was on call and she still thought it was safer to keep baby in then to bring her out. She said that if Jemma stayed at one rate for an hour we would deliver. It was a very stressful situation. I am having very mixed emotions. Do we speak up and start asking them to get this baby out. Is this a decisions we could live with if something happened to her because of prematurity  Do we listen to the doctors and pray nothing happens to her while we are trying to protect her. We are at such a cross road and don't know what to do. It seems like any decision we make can have serious consequences. I tell Jade we have to get to Monday because Dr. M will be here and we will be able to rest comfortable with his thoughts. He is the Dr. that we really began to trust the most. He seems to be overly cautious and on the same page as us on everything.

Early Monday morning Jemma started having decels and then going to a flat rate when she recovered. However they don't consider this a good recovery. The doctors and nurses come in roll Jade fro side to side put O2 on her. They help little Jemma to recover but man when is this madness going to stop. At 6 am we are awoken by a familiar voice Dr. M is in the house. I open my eyes and tell him "Thank God you are here, what are we going to do?" He said we are having her today. Tears swelled up in my eyes I was so relieved. At this point I knew she was better out here with us then struggling in there. Relief flooded me.

Me, Jade & Jora

Jade

Jade was prepped for surgery and at 12:54 our miracle took her first breath. She was pink and making little sounds. She had a an outstanding APGAR scores of 8 at 1 minute and 9 at 5 minutes. Wow she is fierce. She weighed in at 1 lb 12 oz and was 13 inches long. She was 27 weeks and 3 days gestational age. When Dr.M came out to update me on how everything went he told me it was a good thing we delivered her. the original bedside ultrasound was the accurate one. Jemma had not grown and she had NO amniotic fluid. He told me the baby was doing excellent and had gone to the NICU. Jade was alert and oriented and cracking jokes. We both laughed at this my girl has her daddy's sense of humor which is a good thing. 

 I got to meet Jemma Jean when she was an hour old I was not prepared for how small she was. I started bawling. I was so scared. My daughter Jora had been born at 30+4 weeks and weighed 3 lbs 2 oz BUT IT WAS BIG COMPARED TO THIS. I looked at her and love filled my heart but I was so emotional I had to escape the NICU.

The first day Jemma was with us she did amazing and then that night the perfect world seemed to come to an end. Jade got called at 4:30 am to come to the NICU STAT. She runs down there and encounters her baby in full code blue. Her heart had stopped and she wasn't breathing. The team was trying to save her. They had to intubate her to help her breathe. The got her stabilized. Now Jade is scared out of her mind. Afraid to leave the baby. But can you blame her?

The incident was not Jemma's fault her UVC had not placed properly in her heart and it caused her pericardium to fill with blood. Now the medical team wasn't at fault either. These things happen cause these little babies are so small. Things look right but aren't always.  She did have a blood transfusion but was extubated that same morning. So she pulled through excellently. Boy is she fierce!

In all the joy of bringing Jemma, We also had the pain of saying good bye to our precious Jewel. "Praise be to the Lord, to God our Savior, who daily bears our burdens" -Psalm 68:19. With out the grace of God we would have crumbled under the burden of this journey. Thank you Jesus for helping us through this.

The tears still flow our hearts are heavy and we wish.....