Emma and Her Ears

When we were discharged from the NICU on May 15, 2012 we were told she passed her hearing test, but because she was so early they wanted her to follow up with an ENT. When we followed up they discovered fluid in both of her ears. We decided to watch it and see if it would go away on it's own. Every visit they would check again and the fluid would still be there. The hearing test said she wasn't hearing low tones very well, but she had only 2 ear infections and no balance issues as well as it not seeming to effect her speech development, so we took the wait and see approach.
This last visit her hearing test showed more of the same, but the ENT said it is time to get the fluid out. I have been hesitant mostly because I was TERRIFIED of her going under general anesthesia!!  The last time she went under was for her PDA ligation when she was two weeks old, she was tiny barely over her birthweight of 1lb 3oz at the time and the anesthesiologist made a comment that didn't set my mind at ease, "What are you going for the smallest baby to have this procedure done on?" 
I went in to the waiting room feeling very very scared!! Thankfully she came through that surgery great! Even though the recovery was far from easy she came out stronger because of it!
This surgery was very similar in the sense that the anesthesiologist struck again. The ENT came in, got Adam's signature then said it would be just a few minutes before they would take her back.

Emma was snuggly and calm. I was starting to relax a little, and then the anesthesiologist came in. This is how he started: "How old is she?" Me: "She is 22months", Him: "Has she been sick lately?" Me:"Yes she has had a low grade fever, but it has gone away." Him: "Full term? Vaginal? Good Birth weight?" Me: "23weeks 1day, C-section, 1lb 3oz" Him: "What?" He then had me repeat her gestation and then got very grave....Him: "How long was she on the vent? How long has she been off oxygen? or an apnea monitor?" Me: "She was on the vent for 5 weeks, she came home on O2, but has been off both the O2 and apnea monitor for a year." Him:"I don't care how healthy you are there are always risks with anesthesia, you have to know that we do this surgery on sick kids even though it isn't ideal when they are stuffy or sick... she may revert to having apnea after anesthesia so I am going to keep you guys here for a while after surgery" Me:"Ok."
He then left the room. The ENT came in a few minutes later to appologize for the Anesthesiologist being so grumpy. He gave her quite the lecture about scheduling Emma as an outpatient. She assured us that she would not have scheduled Emma outpatient if she wasn't absolutely sure that she would be fine. The nurses came in, we gave Emma a kiss and she waved good-bye to us happily.
In the waiting room Adam held my hand, we tried to ignore Obama on the TV, and I prayed with all my heart that she would be fine!! Just 10mins later the ENT came out to tell us that it took all of 3minutes for her to drain the fluid and place the tubes. She also said that the fluid was really thick and she was really glad that we got it out of there. She said Emma's O2 was looking perfect and that they would come get us soon.  Adam hugged me and I cried!  We sat in the waiting room for what felt like eternity after that until a nurse came and got us. She told us she did great! She didn't even cry when she woke up! We were shown into a room where another nurse was holding Emma. Emma was calm and just looking around. They had me sit and apologized that we were going to be there for a while. The anesthesiologist came in and said that she did great but that he was going to keep us there until noon, just to be safe. The nurse brought Emma juice, which she downed without taking a break.

 Emma was happy and until they said I could get her dressed. As soon as she was dressed she was ready to go home! Thankfully they had food and puzzles to distract her. Every nurse who walked by apologized that the anesthesiologist was keeping us so long and that Emma was obviously fine.... at 11am the anesthesiologist came in, thanked us for being patient with him, and said we could go!
Emma has shown amazing leaps in her speech since surgery, she is quick to try to repeat words we ask her to say and startles from loud noises (like the vacuum, or Mommy and Daddy yelling at her siblings) so we know that her hearing has greatly improved!
What is next for Emma? Well, she is going to start going to group at The Guild School. I have been hesitant about this because of cold/flu/RSV season, but because she has been approved for the Synagis (RSV) shot for all 5 months of RSV season, and she has been amazingly healthy in her crazy fragile life, we (Emma's pediatrician, Adam and I) feel the benefits of group will outweigh the risks to her health! So, please pray her immune system is as amazing as we need it to be and look forward to many exciting updates on her social and developmental advancements!! 

Emma will soon be 19months old

Emma feeding herself

Emma will be 19months old on the 11th of this month! She is making great strides at getting caught up to her actual age in almost every way! She is 17lbs 6oz and 29in long. She can climb up and down stairs all by herself. She is taking 4-5 steps on her own before falling down (mostly because she thinks she can run and forgets to slow down!) She is still a happy little joy who amazes me every day! She just had re-evaluations with speech, OT, PT and Cognitive. Speech and Cognitive she scores at or above her actual age! PT she scores a little lower than her adjusted age (15mo), but mostly because she isn't walking independently quite yet and the test stops once 3 requirements aren't met. So she got no credit for her climbing skills. OT put her at or above her adjusted age! She will still be doing PT once a week and meet with the Speech therapist once a month due to her funny food choices.
Let me explain: Emma was eating pretzels just fine before she even got molars, crackers, chips, noodles, bread even meat don't bother her at all. She even started solids with them thickened. But she doesn't like  fruit or vegetables. She will eat them pureed but refuses them any other way. She is starting to at least taste them, and we play with textures and keep offering. That is why she still get's speech once a month. To continue to work on getting her to eat those things.
But like scooting on her bottom instead of crawling and before that rotating on her tummy and rolling everywhere Emma does things her own way in her own time!

This is Emma's new "thing" she uses it a lot! Usually it is a sign of frustration or that I am asking too much/ She does it a lot to Carrie (her physical therapist) when she tries to get her to try new things.  She cracks me up!



Here she is standing without holding on!
She is getting very brave!  She also loves climbing into chairs and sitting like a big girl. I am in awe of this beautiful miracle. Thank you all for your love and prayers! I have felt the love and support and I am thankful for Emma's Fans!!



Full of life and love! Can't imagine our lives without her!  We don't see the pediatrician again until her 2nd birthday, and we don't see nutrition again for 4months.  ENT in 4months as well, she still has some fluid, but we are waiting until then to decide about tubes. Her only other specialist is Nephrologist, but we are waiting to see the new one when he arrives. So sometime in September probably. Her last renal sonogram looked great only a little stone left so, hopefully we will be discharged at the next visit!
She is still tiny but she is almost in size 4 diapers, is wearing size 12m clothes and almost out of size 2 shoes. The tiniest part of her is her belly button, I don't know if it is a preemie thing or just and Emma thing, but it is still tiny!
This is February 2nd 2012 right after her ambilicle lines came out:



Here it is today at just under 19months:
Have a wonderful day!

I had read this early in my journey, thought I would share it for any that are starting out their journey, or give a little perspective for those who have followed from the beginning! It applies to having a premature birth as well as a child with a disability.

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

My Motherhood Journey

I feel the need to share some of what I have endured to become a mother. I was diagnosed with a bicornuate or heart shaped uterus at my 20week ultrasound with Jadyn. She was born at 36weeks when my water broke and I had to have a c-section because she was footling breech. I had been on modified bed rest for 5 weeks. I was dilated at 2 and had to go to Labor and Delivery  to stop contractions  (that I was not feeling at a ll). Thankfully we had no NICU time with her.
Some of you may know that I am not a stranger to losing babies. I have lost 3 other than Oliver. The other three were at 9, 10 and 11weeks gestation. The first was the worst of the early losses, because at 10weeks I passed the baby at home and then passed out the next day and needed a D&C to take care of the rest. Unfortunately I had a horrible OB who wouldn't give me anything other than Vicodin for the pain, it didn't touch it, and I had horrifically painful cramps for a whole week after the procedure. Thankfully after that week was over the cramps went away. That was my second pregnancy. Jadyn still remembers burying "Nadia Angelica" and where she is buried. She wasn't even two yet. I was told I could start trying to conceive again after 1 cycle. 30 days after my loss I had my period and then I was pregnant again before the next period.
My third pregnancy was scary, I was so nervous about having another miscarriage. I had an ultrasound at 7 weeks and everything looked good. At 11 weeks I took a deep breath feeling better that I made it past the time I had lost the last one. But while out of town I started bleeding A LOT. I was shopping with my Mother in Law, I told her I think I am bleeding. I told her I was going to go to the restroom and check, she stayed in line. I went outside to call my friend who is a nurse and worked at a hospital nearby. I got directions and my MIL drove me to the nearest hospital, My dear friend met me there, her husband and Father in law and then they gave me a blessing, right there in the corner of the ER waiting room. I was so scared and devastated! I knew it was over, I felt so empty and lost. But when the ER Dr. came in the room with the ultrasound there was a perfect little heartbeat and no indication as to where all the blood was coming from. The ER Dr said that there is no way that this pregnancy would continue with the amount of blood that I was losing. He told me not to travel home until I had stopped bleeding. It was a 3hr drive with no hospital along the way and he didn't want me hemorrhaging along the way.  I prayed with all my heart that if there was a way for that baby to survive, to please let me keep it. I had an overwhelming feeling of comfort come over me. I felt wrapped in the arms of my Savior and knew that everything was going to be ok. My MIL and I stayed in a hotel that night by the morning I was no longer bleeding. We returned home and I met with my OB and there was no doubt that there was still a heart beat. A couple of days later I had an ultrasound, it turns out that Kira had a twin. The baby was on the right side of my uterus and it was not as far along as Kira was. So somehow I had gotten pregnant after I was already pregnant, that was where the blood was coming from. That baby was not viable. It never showed up in any subsequent ultrasounds, but thankfully did not cause me to get an infection. I was put on bedrest at 32weeks after dilating to 2cm. I had contractions often for the next 5weeks. I was put on niphedapine to help keep my contractions from dilating my cervix. After I had Kira, born at 37weeks via VBAC, I did pass the remains of that baby. I was told it was a clot, but later realized what it really was.  I was in shock and did not know how to deal with that. I was so grateful Kira was alive and well that I pushed any thoughts of that loss out of my mind.
18 months later, we are living in a new place, I found a wonderful new OB/gyn and Adam and I found out we were pregnant again! I was so worried, I went in for an ultrasound at 9 weeks only to find out that the baby had stopped growing at 6weeks 5days. My OB wanted to do a D&C and also a hysteroscope to get a better look at my uterus. When he came out to talk to us he said that I do not have a bicornuate uterus. I have a septate uterus. My septum divides my uterus in half and goes about 2/3 of the length of my uterus. Septate Uterus is the most common uterine anomaly. It has the worst miscarriage, preterm and late term losses outcomes.  My OB did not recommend removing the septum at that time because I had been able to carry two pregnancies to near term. But he recommended that I wait 3 months to start trying to conceive again.
That was a very difficult 3 months for me! Katie and I had been due one day apart. So I grieved all three losses at that time.
When we did get pregnant again I started to write in my journal every night before I went to bed. It was the only way I could find peace. I put all of my hopes and fears down on paper so I could think positive thoughts and rest easy.  I had a short cervix from 25weeks on, we did progesterone shots and watched it get shorter and shorter. Thinking I could go into labor anytime. But somehow I made it to 38w2d!!! And had another successful VBAC. 
My sixth preg we found out at 7w we were expecting twins, one on each side of my septum. Everything progressed perfectly until my 23w OB appt when I started bleeding. Everthing looked perfect on the ultrasound, cervix long and closed, mucus plug intact, small contractions were being picked up on the monitor but nothing too worrisome. Long story short I delivered my twins less than 24hours later. My son Oliver was born vaginally and Emma was delivered via c-section. Oliver passed away the following morning and Emma spent 125days in the NICU.  Every day Oliver is missed, every moment is bittersweet as I am reminded constantly of what could have been. 
I have been pregnant 6 times, I have lost 4 babies and I have 4 living children. I am so grateful for the gospel of Jesus Christ and the hope for an Eternity with all of my children someday. 
I am not sure our family is complete. We are praying about it, my OB wants to resect the septum if I do, but I am not sure about that yet either. 

So there it is in a nut shell! My Journey to Motherhood. Some may say that I am crazy to even consider getting pregnant again after the trauma of my last deliveries, but I have a strong desire to do God's will. If it is his will that I should not have anymore, then I will accept that. But I will be making that decision with my husband and my Heavenly Father. Emma is a true joy! She teaches me about God's love every single day. If there is another choice spirit waiting for a body and waiting to come into my family then I am going to be in a place spiritually and mentally to accept that too. 


  

copywright: Debbie Mitchell Photography @2013

February 2013

A little update on Emma: 

She is 13months old and almost out of 3-6mo clothes! She is Scooting everywhere on her bottom or rolling. She hasn't figured out how to get back into sitting once she is down, but that doesn't stop her.  We are working with physical therapy still once a week, hoping to get her to crawl soon!
Here is video of her scooting, she is much faster now!

https://www.facebook.com/photo.php?v=10151189013461933&l=7302510757286346755

She saw both the ENT and Nephrologist(Kidney Doc) recently. Both were good visits, the ENT is leaning towards tubes, and she just last week had her first ear infection. But we are waiting to see if the fluid goes away on it's own in about 5 months. Neph came back with more of the same, her kidneys are trending to normal so we are still watching those, they have some stones.
We tried to get Emma insured through Gerber Grow-up, but they said due to her CLD (chronic lung disease) she is ineligible at this time. After over coming so much, it was a reality check for me.
She sees the Opthamologist on the 1st, it is 2hour appointment, with eye dilation. I am hoping that comes back good too. Many preemie's need glasses at age 1.
We are trying to get her to sleep in her crib, but she has been in the rock n play long enough now that she knows the difference, and even when she sleeps, she sleeps less in the crib. Baby steps!

Emma had another feeding assessment with the Speech Therapist yesterday. Emma doesn't drink much from a cup, and isn't wanting to nurse as much. We are going to start having sessions once a month to work on that but also to work on getting her to eat different textures. So far she loves any dry snack and can eat thickened baby food, but doesn't quite know what to do with things that are slimy, like chunks of fruit, banana or avocado.
The Speech Therapist had no concerns with he language skills!! Emma signed "more" for the first time during our session and "all done"! She shakes her head for fun, but seems to know that it means no. She is very clear when she is done eating, she shakes her head and shuts her mouth up tight.  She is showing more and more personality, she isn't quite as quick to smile at everyone, but still smiles readily for me. She clinches her fists tight and grrrrs at her brother and sisters when they take a toy from her, or paper (her favorite thing to eat)! She babbles sweetly and on rare occasions says, "MaMa".
And she is CLAPPING!!! She has been trying for a long time, but now she does it all of the time!!!
We are staying away from playdates, and most outings so that we can keep her home and healthy. I have been getting more nervous about RSV lately, because almost all of the babies that Emma was in the NICU with that I have kept in contact with have been re-hospitalized with it!
I am so proud of my Tiny Warrior! She amazes me every day! I am so blessed to be her Mommy!

Songs and Emma's and Oliver's First Birthday

Plumb: Need you Now

Well, everybody's got a story to tell

And everybody's got a wound to be healed

I want to believe there's beauty here

'Cause oh I get so tired of holding on

I can't let go, I can't move on

I want to believe there's meaning here

Chorus:

How many times have you heard me cry out

"God please take this"?

How many times have you given me strength to

Just keep breathing?

Oh, I need you

God, I need you now.

Standing on a road I didn't plan

Wondering how I got to where I am

I'm trying to hear that still small voice

I'm trying to hear above the noise

Chorus:

How many times have you heard me cry out

"God please take this"?

How many times have you given me strength to

Just keep breathing?

Oh, I need you

God, I need you now.

Oh I walk, Oh I walk through the shadows

And I, I am so afraid

Please stay, please stay right beside me

With every single step I take

How many times have you heard me cry out?

And how many times have you given me strength?

Chorus:

How many times have you heard me cry out

"God please take this"?

How many times have you given me strength to

Just keep breathing?

Oh, I need you

God, I need you now.

I need you now

Oh, I need you

God, I need you now

I need you now

I need you now

 This song really sums up how I survived this last year! As well as the prayers and support from so many wonderful people known and unknown! I thought I would write a little about those early days one year ago and hopefully fill some details that my Facebook posts may have left out.  

One year ago on January 10th I had a regular OB appointment with Dr. Brown at 9:20am. Adam came with me to all of my appointments because of my previous losses, I had a hard time just enjoying being pregnant. Also because with twins it made me even more nervous. I was 23weeks exactly and couldn't complain too much about how the pregnancy had progressed. 

We found out we were having twins at a 7week ultrasound, I had just explained that we were there to make sure there was only one baby in there.  I wish I could have captured Adam's face when the ultrasound wand touched my stomach. The tech didn't say anything but quickly removed the wand. And handed it off to the more experienced tech. The four of us were silent for a moment, then the wand was placed back on my stomach. She said, "Well, there are two in there! One on each side of your septum. I am going to get Dr. Brown, he is going to want to see this!"  

My Sweet Husband said to me, "Well I guess we are going to have 5 children."  I laughed because we always said we wanted 4 but would pray about having more. Dr. Brown came it and said that picture belonged in a book and said he wanted to see me in two weeks to keep a close eye on everything. 

Seeing my OB every three to four weeks throughout the pregnancy made it go by much faster than my previous pregnancies. I had my home doppler so I was able to listen to their heart beats any time I needed to be reassured they were ok. 

At 11 weeks I started having morning sickness, but it wasn't too bad and by 16 weeks it was gone. I was growing fast, I looked much further along than I was!

At 20weeks Adam and I found out we were having one boy and one girl, it was then that they were officially named Oliver Daniel and Emma Claire. We announced it to the family on Christmas Eve with each grandmother opening a present that contained baby shoes. Little loafers for Oliver and pink patents for Emma.

It was so exciting, I was really allowing myself to get hopeful that I would have two babies to take home! 

At the appointment at 23weeks I complained about hemorrhoids (sorry if TMI), Dr. Brown decided to take a look to make sure that nothing else was going on, that is when he noticed I was bleeding.  Not very much, but defiantly red blood. He checked me and said the good news is your cervix is closed. But to be safe he hooked me up to the monitors to make sure I wasn't contracting. I was. Every 5mins, these tiny little baby contractions. Adam and I prayed as we waited for the ultrasound to be available. Once we did the ultrasound we felt a little better, there was no sign of distress for either infant, no sign of where the bleeding was coming from and my cervix was long and closed.  

I am eternally grateful to Dr. Brown for being overly cautious and admitting me to the hospital. The intake nurse was not kind, she was put out that Dr. Brown wanted the babies monitored. Not long after I was checked in I started to pass clots.  I was given turbutaline to hopefully stop the contractions. Right before Dr. Brown left for the night he told me that he wanted to keep me over night and that I would probably be on home bedrest for the remainder of my pregnancy. He said he would check on me in the morning and said goodnight. 

Thankfully Adam stayed with me. By Midnight I was having such painful contractions that the Nurse called the on-call Dr. to come check me, I was dilated to 3cm but not effaced and he gave me more turbutaline and transferred me to my choice of Hospitals, I chose Deaconess. 

I was taken via ambulance, it was the longest 9miles of my life. The pain was intense, but the fear was much worse. 

The nurse who met me in my new room laid it all out, she said that that would be my room for the remainder of my pregnancy, that I should get comfortable. She gave all sorts of statistics none of them good. Then came Dr. Starley, he was very unfeeling, he checked me said I was still at 3cm but fully effaced with the bag of waters bulging. His hand came out with lots of blood on it and he said, "I am going to give you magnesium sulfate to try to stop your labor, but your babies are not viable. If we can't stop it I want you to deliver vaginally so that you wont have to go through the recovery from a c-section. If I do a c-section you are not far enough along to do the low transverse cut, so I will have to do a classical incision that will be a much longer recovery." Then he left the room.  

Adam and I prayed, we cried, all we heard was: If we can't stop your labor your babies are not viable. They will die. 

That is when Adam got a hold of my Mom, and Katie to let them know what was happening. My Mom was there not very much longer. The Magnesium was terrible, they had just started the bolus when I already started feeling the heat and the headache, my contractions were not slowing or getting less intense, I was asking for pain medication, they hurt so bad. Finally they put something in my IV for the pain, but it did NOTHING. I felt like a heavy weight was sitting on my chest. Then I felt sick, I am so proud of my Mom she didn't even look away she just held the bucket for me. I started crying, I told the nurse it was over, I was in transition. I knew it and I knew there was nothing else they could to.  The Dr. checked me and I was at 10cm. They raced me down the hall to the delivery room, I was screaming in pain and begging them to do everything in their power to save my babies. Over and over again I repeated myself, I needed them to know that I was not going to give my babies every opportunity to fight. 

Dr. Starley broke Oliver's bag of water and I pushed and pushed as he pulled Oliver out by his little legs, the cord was wrapped around his tiny neck at 5:00am. They rushed him from the room and the pain subsided for a little while. Emma was not coming down so they ordered a portable ultrasound to see where she was.  Dr. Ilg the neonatologist came to talk to me then, he said that Oliver's apgars were 1 and 5mins later he was at 6, he was intubated and seems to be handling that ok. He talked about Emma, he said that her  best chance was to be delivered via c-section. I immediately agreed to do that and after the ultrasound confirmed she was transverse we were moved to the operating room. The contractions were coming faster and faster, they rolled me on my side and gave me the epidural. I was so relieved. 

Dr. Starley said he had blood on hand because of the amount of blood I had already lost and would loose during the c-section I would need it. As the Assisting Dr. came in they both decided they could do the low transverse incision and at 6:05am Emma came into the world, I did not see her. Much later I found out that she made an audible cry, she even kept her heart rate up as they stabilized her. Her apgars were 7 and 8, unheard of for a 23weeker!

I have a hard time writing about what came next. I was rolled from the operating room to the NICU to see my two tiny bruised babies. Then taken to my room to rest. At some point they brought me a pump, I started pumping immediately. Adam was able to do some of their care, like rubbing ointment on their very fragile skin and changing their very tiny diapers.
I called every so often to check on them and Adam went up to see them at care times. They were stable through the night, but that morning Dr. Grettabeck came to my room to tell us Oliver took a turn for the worst. He suffered severe hemorrhages on both sides of his brain, and though they were trying to stabilize him, he was not handling it well. Her recommendation was to remove support and end his suffering. Adam and I were stunned, then she got a phone call from the NICU, Oliver was crashing, we followed her up to say good-bye to our very loved, very tiny little boy. He was seizing when we got there. They were doing all they could to revive him. They removed all of the tubes and wires, wrapped him in a blanket and handed him to me in a private area. Adam and I wept. My Mom was called, soon she, Katie, Jeff and Jill came to say good-bye as well.  He passed peacefully in my arms. I will forever treasure the pictures that were taken of that time. And later the professional pictures we had taken so that we could have something tangible, real to remind us he was here!
Planning his funeral was difficult. But Adam and I did it together, with some very caring people to help.

I pumped every two- three hours. I was discharged from the hospital, going home with out either baby was horrible. Leaving Emma there in the care of people that I didn't know was hard, but necessary! It sucked!

And so my juggling of home life and NICU life began. I was so blessed to have wonderful people in my life who took over childcare arrangements and dinner arrangements so that I was able to visit my fighting warrior twice a day for the entire 125day stay. This song would come on the radio both to and from the hospital, and I would mourn Oliver. I would miss him and wish that I could be caring for him here as well! 

Miranda Lambert: Over You

Weather man said it's gonna snow,

By now I should be used to the cold. 

Mid-February shouldn't be so scary.

It was only December, 

I still remember the presents,the tree, you and me.

But you went away,

How dare you?

I miss you. 

They say I'll be okay,

But I'm not going to ever get over you.

Living alone, here in this place,

I think of you and I'm not afraid. 

Your favorite records make me feel better,

Cause you sing along with every song.

I know you didn't mean to give them to me. 

But you went away, 

How dare you? 

I miss you. 

They say I'll be okay, 

But I'm not going to ever get over you. 

It really sinks in, you know, 

When I see it in stone

'Cause you went away

How dare you?

I miss you. 

They say I'll be okay, 

But I'm not going to ever get over you.

Most of the journey was summed up in my other post, but I wanted to add that at the end of Emma's stay a few of the Dr.s told me of the nights they sat by Emma's bed, not sure if she would pull through. One of the Dr.s made a mathematical error at when Emma was only a few weeks old, that wasn't caught by the blood bank or her nurse that caused her to get twice the number of platelettes than she should have gotten. My day was shattered when the Dr. called to tell me of the mistake, I prayed with all my heart that she would be ok. Thankfully the situation was handled so wonderfully, everyone was praying for her in the NICU and running lots of tests, as well as consulting specialists. There was no ill effect from the error. But, it shook me! 

Emma's nurses

Every day is a gift! I have come to appreciate that so much more. Miracles happen, prayers get answered and people (even strangers) can be angels in your life. 

Emma's Birthday was so bittersweet! The week before she needed breathing treatments for her cold, and she was so congested, as well as teething. We put her party off a week so that she could feel better for her party. I am thankful for the love that has been poured out on my family and I am thankful for the opportunity to allow others to serve me. 

Emma is caught up on Speech already graduated from that service. She is still getting physical therapy once a week to help her stay on track. She rolls, sits up unassisted and scoots on her butt everywhere she wants to go. She loves to smile and is adored by all who meet her. Her siblings treat her like the treasure that she is. Especially Connor, he loves his baby sister! 

We miss Oliver! We talk about him all of the time, my kids tell me they "wish Oliver didn't have to die." Connor says he misses his brother and wants to "see him". Kira prays that the resurrection will be soon so that we can all see Oliver and the other babies that we didn't get to meet again.  

At the birthday party we all made stepping stones for Oliver's grave site, each one is unique. We will go place them when the snow melts for good.