Missing Jacob

I know I will never NOT miss Jacob, but some days I wish it didn't hurt so bad. I felt like I was getting better, until 6 months hit. I have been struggling ever since. I read an excerpt out of a book written about child loss. It said the average mother takes 4 years to fully accept and grieve the loss of a child. And if that child was a twin, it can take up to 8, because of the constant reminder of what should have been. I don't want to be miserable for 8 years. I don't want to hurt the way I do right now. In honor of my baby boy, I have started making jewelry. Partly because it is something I can actually do when I am missing him, verses running over and over in my head the "what ifs", but partly because I want to make a difference. I don't want this pain to be for nothing. I want to help others who are in this situation, and I want to do all I can to prevent any more parents and babies from getting here. No one understand this pain. Many get close to it, but this pain is different. I fought for this child. For 13 weeks, I put everything else on hold, including risking my life, to give him a chance to survive. I begged God to let him live. But He didn't let Jacob stay with me. I don't know why, but I know there is a bigger pictures that I cannot see. I know something big is going to come out of this. And anything I can do to help i will. These babies need us. they need our help, our support and most of all, they need us to have Faith that God knows what he is doing, even if it really sucks at the time. Every I item I make I plan on selling. Any profit I make will be donated directly to March of Dimes to help fund research for PPROM. I don't know when it will come, but some day there will be a cure for this. It will no longer be the death sentence it is today. Mothers will no longer be told their child has a 0% chance at life. I hope one day I can look back and know I helped make that a possibility.

Our Precious Smiley Girl

She decided to sleep instead of do tummy time

For a child whose life started off really hard, this girl truly enjoys it! Juliet loves to smile and finds pure joy in the people around her. She is beginning to interact more and more every day. Her personality is wonderful. She is a joy to be around and will give a smile to anyone. Juliet is started to try and sit on her own as well as scoot around on her back. However, she is a little confused on tummy time. She feels that is perfect time to completely crash!
She had her 6th month shots last week and did pretty well. She was officially 12 pounds 5 ounces, which is not bad considering she had the stomach bug on and off for 4 weeks. She was 23 inches long and her head was also growing great. She officially made it on the regular growth chart! Since she was born so early, she has been on a "preemie" growth chart because she could not be charted on a regular one. But she is officially in the 2 percentile for weight on a regular chart! (50 is average for those who don't know). While in any other situation, I would not be thrilled, I am beyond excited to see her starting to close the gap. Slowly, she will get there, and until then, we are enjoying having our "newborn" for a little longer!

 

Auntie Tara Came for a Visit

Tara was one of Juliet's primary nurses. She is so much fun and was always so sweet. She came to visit us on May 16th. Juliet was all smiles for Tara! The other kids loved her too, and Loralei keeps asking when she will come back. Tara is not just a nurse, she has become part of our family, and we feel so very blessed to have her in our life!

So tired after Tara's visit she fell asleep during her diaper change!

Sister Love

There is no greater bond, than the one between sisters! Loralei is in love with her baby sister. Any chance she gets, she is ready to step in and help mom. Whether it be giving Juliet her passy, holding her for a few minutes, or just playing with her, Loralei has got it down. I just hope she doesn't ask for another one!

These two are going to be trouble!

Bath Time

One of Juliet's new favorite things is to take a bath. She is like her mama, and loves the water hot! Nothing better than a hot bath, a bottle and some snuggle time to get ready for bed!

Mother's Day

Mother's Day was a bittersweet day this year. I usually look forward to the appreciation we get as mothers. Some days it feels like there is none at all. But this year, I was just ready for it to be over. Seeing all the pictures of moms with their children, enjoying the day surrounded by those who they love so very deeply, was painful. Don't get me wrong, spending the day with 4 of kids was wonderful, but knowing I was missing one just hurt. I didn't want to celebrate. I didn't want to take pictures with my kids, because I knew, no matter how hard I tried, there was going to be something, no someone, missing. But, despite the pain of not having Jacob, I do have Juliet. And that is something to be celebrated. When people ask me how many kids I have, I never thought it would be a "hard" question to answer. Seems pretty simple. But I get stumped every time. Do I say I have 5 kids, and risk the chance of having to explain it, or do I say 4, and choke up inside feeling like I let Jacob down by not mentioning him? It is one of those questions that I'm sure I will answer different every time. But for this Mother's Day, I have to enjoy what I have, because you never know when it will be gone. Jacob and Juliet made me a mother for the 4th and 5th time. And that is something to be celebrated. I cannot love these kids any more than I do today. They have made me a better person, they have shown me God in ways only a child can do. I have a lot of names, but the one I love the best is Mom.

Kangaroo Care Awareness Day

Most people have no idea what "kangaroo care" means. But to those of us who have ever had a baby in the NICU, it means so many wonderful things. Kangaroo care means holding your precious child. It is bonding, and healing, and just feeling like a parent. It was originated in third world countries, where there are no incubators to keep your child warm. Instead, the child is placed on mom's chest, skin to skin, and her body keeps the baby's body temperature moderate. A mother's body will actually warm up if the child is cold, or cool down if the child is too hot. It is amazing to watch a mother's body react to her child's needs. Kangaroo care is the one thing I can look back and think of as a good experience  It meant I got to hold Juliet. Her breathing always got better, her temperature got better, her oxygen requirements dropped, and she would go into a deep sleep, which meant she was growing, and healing. One thing I have not told many people is that I had a really hard time bonding with Juliet. My whole pregnancy I was so focused on Jacob, she was more in the background  After he was gone, I realized I didn't know my daughter like I knew Jacob. I remember sitting and looking at her thinking to myself I really had no idea if she was mine. I had no connection to her. Then, when she was 16 days old, I got to hold her for the first time. The nurse placed her down on my chest and I could feel my body changing to what she needed. I watched as my temperature rose on the thermometer, in order to keep her warm. It was because of Kangaroo care that I began to feel like she was mine. We made memories, sitting in those blue chairs, just Juliet and I. I did a lot of healing in those chairs. Kangaroo care if one of the best things a mother can do for her child, and Juliet and I still enjoy our time together. Getting the word out is only part of the battle. We need to encourage ALL mothers to embrace this idea, for the health of the mother and the child.

Dear Jacob

To my precious son Jacob:
I opened your box today. It is the first time in over 5 months. I cannot believe I said goodbye 6 months ago today. I sat and went through all the pictures of you. My favorites are the ones with your sister. The only ones I have of my two perfect twins together. I saw your little toes again. Your hands were so tiny. Your little footprints. Your little club foot. Your nose that fit you so well. I knew you were mine because of that nose. The pictures of me and your dad holding you for the first and last time. I held your diaper. I kissed your little butterfly. I realized how small you were, but you were still perfect. Your little blood pressure cuff, that just barely fits over my finger. Your hat that was too big for your precious little head. I held your blanket close to my face, and I could still smell you. That sweet, innocent newborn smell. I miss that, a lot. I miss you. I miss feeling you kick and squirm.  I miss what should have been. I miss your sweet little face. I read over what the nurses said about you. They all loved you. You have impacted so many people, my son. I am proud of you. I am proud of your story, and I am proud to called your mother. But along with that pride is pain. A deep, deep, consuming pain. A pain that will never dull. A pain that brings me to my knees, crying and hurting for you. I miss you. A lot. That will never change. Jakey, I promised myself I would not cry today, but I broke that promise. Over and over again I am going to break that promise.

Jacob, We'll See You Soon

A little light shot across the sky

and faster than a comet fled.

those who saw it wondered why

it left so soon as tears were shed.

Seeing this light flash before their eyes

and leave a blank where bright had been.

They sadly sought to say good-bye

wishing it would glow again.

this little light, this boy Jacob

left much too soon for other shores.

Somehow he'll know how much we'll miss him

as Jesus carried him thru Heaven's door.

Oh the sweet songs he would have sung

what games he would have played.

High the mountains he would have climbed 

saved for some other day.

So we'll cry for now but know his light

is making darkness flee somewhere.

Though soon he left from out our sight

Jacob'll know how much we care.

No sad good-byes to say today

"We'll meet again" must be our tune.

With his mom and dad we all should say

not "so long" but "we'll see you soon".

Dedicated to Brett and Shelly by Michael Clearman

6 Months old

Wow time has blown by so fast. Today marks six months from the first time I saw face to face, my twins. Those two precious children that God blessed with me. The two I fought so hard for every day. The two that I risked my life in order to give them the best chance at life on this earth. While I only get to keep one here with me, they will always be my babies. Juliet has come so far from that little baby I saw in the isolete. What a fascinating child she is, with such an amazing testament to the faithfulness of God. I know one day she will understand just how amazing God has been to us, and I pray she will feel the need to share her story, just as I have. I know she misses Jacob. Its amazing to see, but there are moments when I know, she knows someone is missing. She had a bond with him that will never be replaced. He was her angel, her brother, her lifesaver. Today we celebrate the six months of life Juliet has had, and we look forward to so many more. We remember those precious moments we had with Jacob. We honor him, for without Jacob, Juliet would not be here either. What a blessing she is to her family. Juju bug, we love you!

Puppy Love

There is nothing sweeter than getting covered in puppy kisses. There is a reason they call dog "baby's best friend"

Siblings for Life

This is girl is so loved. Not only does she have her "big" brother in heaven watching over her, she has a big sister and 2 more big brothers keeping her safe here. I have never seen this kind of love. Our oldest Luke has had some great quotes about her already. Everywhere from "Mom, why is Taylor Swift singing about my sister?" to "Dad wont have to worry, I'll beat up any boy that tries to date her".  My favorite of all though, was something he said just the other day. I caught him just staring at her with so much love in his eyes. When I asked if there was something wrong, he simply said "Mom, she is so cute, I just want to make sure I know what she looks like in case God wants her back, just like Jacob". No sadness in his voice, just pure joy at the sight of his baby sister home. You cannot tell me children do not understand God. My little 6 year old has a better understanding and peace about what God is doing, than anyone I have ever met. I hope one day I will be like him. But for now, I am just so thankful that Juliet has a big brother like that.

Baby Dedication

 Sunday April 28th, 2013 Brett and I stood in front of our church family and dedicated Juliet to the Lord. We agreed to raise her according the Word with the help of our church family. It was a wonderful day to present her to our family. They carried us through this pregnancy and the loss of Jacob by meals, hugs, and most importantly prayers. Juliet is on loan to us. She is not ours to keep. We are honored God has trusted her to us for this life, and we look forward to sharing her, her story, and Jacob's story for the rest of our lives. God has blessed us so much, and it was wonderful to be able to offer her back to Him. What a blessing she is!

First Ambulance Ride

 While no one likes being sick, you never realize how serious it is until you are being rushed down to the ER by ambulance with your mircro-preemie. All over a fever of 102.9 When Juliet was released from the hospital, they told us that if she ever got a fever over 100.4, we needed to get her seen by a doctor immediately  because of how fast it can progress in their little systems. Well, we learned the hard way how true that really is. Juliet had a fever of 99.1 at 4pm on April 22nd. We called her doctor and they told us to just watch her. If it stayed around that, we could stay home. As you have guessed, it did not.  By 8pm, her fever was the same but she thew up her her meal and was very cranky. We were checking her fever regularly, but when we went back to check it at 11:30pm, it was up 101.5. Within minutes, she went completely limp and begin having trouble breathing. An ambulance was here within 5 minutes of calling, and it took us only 15 minutes to make the 45 minute commute down to Dell Children's hospital. She had numerous blood tests, chest x-rays and a few other procedures to figure out what was going on.

While it was very scary, we tried to find joy in this trip, as we knew there was a reason God was allowing our little miracle baby to get sick. Our nurse came in to see her, whose name just happened to be Romeo. Then came in the doctor: a tall, blonde man who introduced himself as Dr. Kienstra. Brett and I both knew there was no way this was the same wonderful WOMAN who took care of our Juliet for 119 days while in the NICU. It was, however, her husband. We all had a good laugh about it and I wish I could have been at their dinner table the next night hearing the conversation. It turned out to be just a virus and after 5 hours of observation, we were allowed to come back home. It did however take a toll on her, and she managed to catch a nasty stomach bug, not once, but FOUR times within the next few weeks. She is now put back on lock down at the house until the end of May to allow her system time to recover and heal. This means we missed the March of Dimes walk, as well as the next few weeks of church and fun with friends. While its hard to stay at home 24/7, if that is what our little peanut needs, I will gladly do it without hesitation.

Dr. Appointments Galore!!

One thing is for sure: when you have a micro preemie, you spend A LOT of time going to and from doctor appointments. Juliet went back to see her GI doctor, Dr. Rangwalla, on April 27. We got some great news too! While we did not take her off her medication, we did not weight adjust it, which means the weaning process has started. As long as she tolerates it well, we will continue to wean her off both of her medications over the summer. If all goes to plan, she will officially be medication free by August 2013, at only 9 months of age! A week later, we went back to see the HR pediatrician  as well as all the therapist. Juliet is right on track for her development, with a slight delay in speech. Of course, once we got home, she started to babble, which means she was just being stubborn  She still has a very strong right preference, which means she always turns to the right. This could cause issues later as the muscles in her neck may not strengthen and lengthen correctly. We decided to start therapy for her neck now instead of waiting another 2 months for a later evaluation. As much as I wish she was not needing any therapy, I want to catch everything as quickly as possible to give her the best chance. We are hoping to start that therapy in the next few weeks. All in all, she is doing wonderful and we are looking forward to watching her as she begins to get more interactive and mobile.