I am still confident of this:
I will see the goodness of the Lord in the land of the living.
Wait for the Lord;
be strong and take heart
and wait for the Lord
Psalm 27: 13-14

Sunday, December 13, 2009

Update on Evan

Today I am grateful. I am grateful for the sound of my son jabbering away like crazy on my bed while I also hear his daddy snoring!! So funny!! I am grateful that after 10 years and heartache, we have a son in our bed. I am grateful for the fight his brother held for us, and I am grateful that God did not choose to take Evan from us as well. I am grateful that I have this honor of calling myself "mom". Through unbelievable pain I have been given this ray of light, and I am grateful for him!! Well, we are 2 of 4 appointments done in a 5 day span!! On Monday Evan received his second/final dose of H1N1 and seasonal flu. I think I already mentioned that though (sorry if I'm repetitive...very tired these days!!). Thursday was Evan's appointment with one of his NICU doctors for a regular follow up. Dr. Wonko was thrilled with how Evan is looking!! He said that if he didn't know Evan and didn't know that he was 12 weeks early, he would never guess today that Evan is a preemie!!! That was nice to hear! He said that Evan is perfectly proportioned and is gaining weight very well. He did the regular run through of check points and Evan received check marks in all areas. PHEW!! It's STILL very nerve wracking going to these appoinments because we know the reality of the life a preemie...things can creep up at any given point. But to date we rejoice in having our little man doing so well. Of course it was again stressed the importance of this season of RSV in particular for Evan. Dr. W was happy to hear that we aren't planning any big trips and that we are going to be around home. He reinforced the importance of keeping ill people away from Evan and the importance of proper hygiene care when handling Evan. He said he knows we'll hear often how healthy Evan looks, so it may be overlooked the reality that looks are only part of the puzzle. Evan looks healthy, but in immune compromised, so therefore we can't just trust he will breeze through this season just because he looks healthy. It's nice to have the doctors support each of us as preemie parents and to help us understand that our house rules for our children are not just neurotic rantings, but very real guidelines. I had a good discussion with Dr. W and he helped encourage our efforts and all that we are doing for our son. Evan now weighs 17lbs 11ou!!!!!!!!!! And is 27 inches (69 cms)!! He is just blowing through existing clothes. I've packed two tubs of his clothes away and had to go out to buy more stuff for him for 6-12 months!! Right now he is in 9 month sleepers (from Costco....flannel jammies...OH SO COMFY!) but even those are starting to get short on him!! CRAZY!! So that was a good and encouraging visit. Then on Friday we were back at the hospital for round two of Evan's RSV immunization shots. This is month 2 of 5 months of double-dose shots for him. Strange, but Evan KNEW what was happening. He was just staring down the nurses (two nurses do the shots together so that it is only one shock for the babies when they need two needles) and was fussing. And then when they started to rub the alcohol swab on his legs...he started to whine and try to pull away. :( POOR KID!!! Well, then when they did the needles the tears began, and then the LOOK on Evan's face was that of total betrayal and hurt!! It's so sad that in order to keep my son somewhat protected from all this stuff we must inflict pain on him :( BUT, it's a necessary evil. Better that then him back in hospital! He rebounds quickly though, so that was good. Monday we are back at the hospital AGAIN for his second and final follow up from his hernia surgery. And then Tuesday we see my regular doctor for his 9mth/6mth wellness check. After that we are good for appointments for a couple of weeks. Ahhhhhh, it will be a nice break. Evan's appetite is relatively back to normal now that tooth number one is up. He is drinking his regular amounts from his bottle and eating his food. He is still chewing like mad on everything, but we have been able to cut out the Tylenol for a while. So that is the latest on Evan. He makes me laugh every day and he warms my heart. He helps to bring healing through the hurting, though the hurting will always remain. I miss his brother, our son. Thoughts of last year and my big belly and the excitement of Christmas...those memories are precious, but painful. I've started reading from an extremely helpful website from a group called CLIMB - Center for Loss in Multiple Birth. The information is like reading my own thoughts, the stories of other mothers so familiar. For once I don't feel so very alone in this unique situation of being joyful, yet grieving all at once. It is helping me validate things in my mind and my life. It is helping me to realize I will always be a mother of multiples...no matter who doesn't see it. And Zac will always be a part of our lives and our family, and there is nothing wrong about wanting to speak about him and make him a part of things. I remember a story a lady shared with a group of us on one of my support groups...when she lost one of her children her mother-in-law ALWAYS made their son a part of everything even though he was never to be physically present. She would bring over little "gifts" on each birthday, and this little boys name was mentioned at gatherings with her other grandchildren. She would stop by to bring her daughter-in-law a flower every so often when she was thinking of her grandson. This story touched me. It touched me that a person wouldn't be afraid to show that they remember, and that they want this little life to continue on. Thinking about that story still brings tears to my eyes. As difficult as it was for me to put up a Christmas tree this year, I bought ornaments for BOTH Evan AND Zac, and still have one special one that I made for our babies that we lost Dec '07. For Evan and Zac I have cute ornaments of reindeer holding an "E" and one holding a "Z". I also bought two ornaments that hold pictures, and am putting in a picture of Evan and one of Zac. My sons can at least be together in this sense. And I will not disclude Zac...ever. He lived, he breathed, he looked in to our eyes. He knew us, he felt us and we love him forever. I know that he is healthy, happy and loved in heaven. I know he is not alone. I know he will never suffer again. And I know he wants his mommy to be happy. And for me to be happy means never having Zac "tucked away" and not mentioned. It means remembering that Evan is a twin, and that he has a special brother. That both my boys are fighters, and both my boys are precious. And both have a very special place in our lives. Well, I hear Evan waking from his nap, so I should go. Blessings to everyone, and thank you for your continued prayers. As usual, please continue to pray for Evan's health and safety, and please pray for peace in my heart this Christmas season. Thank you!


  1. Hi,

    I have been following your blog from the beginning and my heart goes out to you. I can only imagine the struggles you have had. Evan looks wonderful, happy and bleessed to have been born into your family.

    In your blog you have said several times that God wanted to take your children from you. I wanted to see if a different point of view may help. If you find this not to be helpful then disregard it..as i do not wish to cause you any further hardship.

    Unfortunatle i too have had to face a similar struggle with the loss of a son 17 years ago. This is how I see it and what i have learned thru my spiritual formation over the years.

    As you are probably already aware of...There is pain and darkness as result of original sin... God did not intend for death in the physical sense to occur.....although ultimately devinely present at those sacred moments did not wish to take any of your children from you. Our fallen broken world dating back to the time of Adam and Eve are responsible.

    Jesus desperately wants both you and your family to feel peace, joy, consolation and healing especially during this season of Miracles. Please understand... He does not want anything but life ...true life for you and your children. Jesus is a God of gentilness, hope compassion, healing, Love and LIFE. Not death. Although he is ever present to walk with you ...He never intended any of this...infertility and death are a result of our fallen world.

    Why some women seemingly get pregnant just thinking about it or why a 13 yo girl aborts a healthly baby without any hesitation or why capable prepared loving parents struggle beyond believe to conceive and yet remain childless.. I do not have the answers to these and in this world they shall remain a mystery.

    But what I do know is that God did not love you or children less or want to take them from you. He loved you more and those children more because He Knew you were all very vulnerable. He knew you had struggled with all the world had to offer to bring those children into the world safely..He knew your children were in grave danger and that is why he sent you all of those angels that you have spoken about throughout your journey..the nurses, the doctors,your family..your husband..ect..ect...He still knows you are all still very vulnerable and therfore is present for every second of every day. That is obvious thru your blog.

    You and many prayed hard for a Miracle. God graciously, gently and with LOVE stepped in. I believe he did answered you with the Miracle you so deserved ....the Miracle has just not been revealed yet. For God stands outside of time.

    Peace in Christ

    17 year survivor

  2. I thank you so much for your words and encouragement!! Thank you for reaching out!