Etched Forever: Different

A moment in time. Frozen. Forever. Etched forever in my mind.

Staring at my face in the mirror after my water broke in disbelief that this was happening.

Calling my husband and him telling me I needed to go to the Labor and Delivery immediately.

I was only 33 weeks. I was all alone with my 19 month old daughter. My husband was seven hours away. This couldn’t be, shouldn’t be happening.

Dear Lord – Help me.

Alone in my hospital bed. No one to hold my hand. No one tell me it was going to be okay.

Scared. Yelling at my husband that if he didn’t get here before I delivered, I would never forgive him. Crazy, pregnant hormones.

Relieved. My husband arrived.

Contractions. Very Painful back contractions. I remember the nurse asking me to quiet down.

I just wanted relief so I agreed to the c-section.

Scared and Cold. Naked. Vulnerable. Praying for God’s protection. So cold. So cold. And so very scared.

My husband was behind the curtain with me. I was wanting to hear desperately my son’s first cry, so I would know he was okay.

After only hearing a brief cry the silence in the room was deafening. Why couldn’t I hear him? I yelled at the doctor. IS HE OKAY? Yes. They had taken him through the NICU window.

I would not be the first person to lay eyes on my son. I would not be the first person to touch his skin. I would not be the first voice he would hear. Oh. My heart.

Cold. Shaking. I couldn’t breathe. I just wanted the c-section to be over. I started coughing. I couldn’t stop. And I was so cold. They couldn’t tell me if my son was okay. I just couldn’t breathe. Then, darkness. The anesthesiologist put me out after I agreed.

I should be cheerful. Put on my positive mask. I couldn’t let people know that I was scared for my son. Seeing pictures of my son with his CPAP was tough. But he was beautiful and precious.

The bruised hands. The bruised feet. The bruised head. So many pokes on his tiny body. Good, Lord. Why? I was crushed on the inside. This was all my fault. Why had my body betrayed me? Why had my body caused my son to be into the NICU?

I drank Ryan in every chance I could. His sweet smell. His sweet snuggles. It was never enough and sadly, every night, I had to leave my son in the hands of someone else. It should have been at home with me. Nursing freely and without the eyes of others.

Blood in his stools. Nurse, is this normal? Panic was overcoming me again. This can’t be happening. I don’t think I can endure this.

“This could be devastating.” I will never forgot those words. They are forever etched in my mind. Ryan had an infection in his bowels. Oh, Dear Lord – Please help my son. See the train track in the x-rays of bowels? That is a sign of NEC. I could see the two parallel lines on the X-ray. There was no mistaking them.

Another tube. This time down into his belly. Crying. And more Crying. And then more. Dear Lord – What had I done? Ryan just wanted to eat, but he couldn’t, it was to help him get better. A whole seven days with no eating. Just fluids and medicine. His sweet smell went away. He was lucky though. They caught it early and was able to treat the infection before it became anything really serious. Thankful. Extremely, thankful.

It was during this week my husband had an argument. I don’t remember about what exactly, but I think it had something to do with the amount of time I was spending at the NICU and I had a husband and daughter at home that needed me too. Guilt. More Guilt.

Ryan needs me. I don’t know what it is, but there is something different about him. There is something different about him. He needs me. Those words are forever etched in my mind. To this day, these words I think about often. It’s the whole reason I’m writing this.

There is something different about him. Did I know in my hearts of hearts then that he would be different. Why had I thought that?

I’ve been strongly bonded to Ryan since I was able to hold him. Not more than my beautiful daughter. But it is a different bond and something I haven’t yet been able to explain or put into even vague words. I just knew that he would need me and need me in a different way. A sixth sense? Mother’s instincts? God preparing me for our journey that was ahead? I don’t know but that moment is forever etched in my brain. Staring at him in the NICU. Watching him sleep. Holding his tiny hand and promising him that whatever it is he needed from me, I would give it to him.

These past few weeks, I have been coming to term with my son’s diagnosis of Autism. I’ve been processing it quietly – in the confines of my mind. But over the past few weeks, those words keep echoing in my head. There is something different about him. He needs me. My beautiful son. My laughing son. My rambunctious son. My happy son. He needs me…. but I think I need him more than he needs me. I love you, Ryan Scott Grover.

 

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A Piece of the Puzzle

autism heartAs many of you know, Ryan was a part of an Early Intervention program since he was about 2 years old. The first initial evaluation, I was told that he had some “red flags” for Autism. We were concerned about speech, but inwardly, I had some suspicions if the was displaying some signs of Autism. His Early Intervention therapy was extremely beneficial. As his parents, we learned new ways of working with Ryan. In addition to a speech therapist coming about 3 times a month, he was also able to attend a Sensory Pre-K Class. By the end of 2012, Ryan was finally beginning to say two word phases. He made huge leaps and bounds in his speech. He also started pointing. I had actually started to convince myself that maybe he was “normal” (for whatever “normal” means) but as 2013 continued on, some of his behavior became increasingly worse. Trying to get him into the Early Intervention program in North Dakota, proved difficult for us. Mostly because he was bordering on turning three and they didn’t seem to think it would be beneficial to enroll him since he wouldn’t qualify for services after three. His speech was improving every month and trying to get settled into our life here in North Dakota things became hectic.. months started to slip by and after seeing some behaviors worsening, I decided I couldn’t put off getting him into some kind of program or getting him evaluated. At this point, I was tired. Tired of the constant battle in my head and wondering if he was autistic-was I making it all up, did I just spoil him too much (I have heard this comment more than once), was it just a “phase” like most people would tell me and he would just grow out of it? I mean after all, he looks “normal.” I’m not sure what most people envision Autistic children as – but for some reason, I can’t help but think that people think Autistic children spend more of their time sitting in corner, flapping their arms, drooling all over them self having no kind of communication with other people. I just didn’t want the constant battle of wondering, so I set out on a mission to get a professional diagnosis done for him. I was also prompted to seek out a diagnosis because it was proving difficult to get services started in rural North Dakota. I knew that once I had the diagnosis, services would start to open up for him. So, I called about every number I could find on google relating to Autism Services in North Dakota. I talked to several different people and left several voice mails. Calling Minot State University proved the most helpful. They were able to get me in contact with Special Ed services in our county and they also told me about the Anne Carlsen Center in Jamestown, North Dakota. This was probably around the end of June, so with summer break, there wasn’t anything the Special Ed Services could do immediately since most were on their summer break. After contemplating whether or not go with public diagnosis services or with a private one (and posting on an autism group which would be preferred-which 100% said private would be the way to go), I decided to have his professional diagnosis done at the Anne Carlsen Center (a privately run center). Fortunately, they offer their Autism Clinic free of charge.

On Monday, we made the almost four hour drive down to Jamestown and spent the night at the hotel. His appointment was at 8 in the morning, and I just couldn’t see making the drive in the wee hours of the morning. We walked in and had to sign in, Ryan immediately went into melt down mode when I wouldn’t let him run up the stairs. He began to scream. I signed him in and then I heard someone say from behind me, “This must be Ryan.” I was a little embarrassed thinking they had known it was him because of the melt down he was having (but in hindsight, I am quite sure they were waiting for us to take us back to the evaluation room). As soon as they opened the door, there were four more people in the room around a table. I was taken a little off guard, because for some reason, I thought we would be given time to settle down and then everyone would come in. They introduced themselves and began the evaluation process and starting observing Ryan. They would ask us questions from time to time and sometimes get us involved with Ryan. I was pretty impressed with Ryan’s behavior. After a while, he warmed up to a lot of the ladies. The first part, they brought out toys and would ask him to complete certain tasks. They had a bubble machine which he loved and did not forget about even after they hid it from him so he could focus on something else 🙂 . Then they took him to a sensory play room. The most notable time spent in there was when Ryan was in the ball pit. He would lay so still and he was just about covered in the colorful, plastic balls. The first time, he just laid there which seemed to be for minutes (I’m sure it wasn’t). Then, I asked him if he was sleeping and he started to snore, and then I prompted him a few times to “Wake Up” and he finally popped up out of the balls. He repeated this several times. At one point, he asked to take his clothes off, which they allowed us to do. So, then he was running around in the play room in only his diaper. It was cute! Then back to the evaluation room for a few more play scenarios. Then, they asked us to leave while they discussed Ryan. About an hour later, they asked us to return.

His diagnosis was done using the DSM-V. With the introduction of DSM-V, they changed some of the criteria and also do not diagnose as PPD-NOS, Autism, or Aspergers.  Now, there is only Autism Spectrum Disorder with three different levels: level 1, requiring support; level 2, requiring substantial support; and level 3, requiring very substantial support. They walked us through the DSM-V and their answers. At the end, it was blatantly obvious that he is Autistic and there was nothing borderline about the diagnosis. His official diagnosis is he has Autism Spectrum Disorder, Level 2. They said with the old standards, he would have been diagnosed with Autism and that as he got older they would have continued to evaluate him with a possible diagnosis of Aspergers. They said, Ryan is extremely bright and full of potential. He definitely is very interested in learning how things work and wouldn’t be surprised if one day he invented something. In all the evaluation they have done, not one kid had shown interest in a chair lift in the play room. Ryan did and he was not satisfied with giving it a once look over. He had to move all the parts on it and see how it worked. Of course, I wasn’t surprised. Ryan is extremely bright, very inquisitive, and ALWAYS trying to figure out how things work.

So what now? Nothing really that I wasn’t already doing or wanting to do. His diagnosis doesn’t really change a thing or who Ryan is. It just helps us know how to better help him and get him the services he needs. I will never let Ryan be defined by Autism – it is simply helps explains why he may do certain things. I don’t expect anything less out of him or out of us as his parents. I’m going to keep being an advocate for my son and bring out the best in him as anyone parent would do for their child – autistic or not.

I’m still sorting out all of my feelings. I did not cry when they told me. I had already known in my heart. However, on the ride home, I did feel like crying sometimes, but no tears fell. I can’t help but wonder what long term this means. Will he be able to have meaningful relationships? Will he learn to be compassionate? I hope so, but I know I need to concentrate on the here and now. I think it will take a few days to fully sort out all of my feelings.

Our next step is following up with an already schedule appointment in early September to set up local services for Ryan. Also, finding a pediatrician for Ryan where so that he can get an official referral for occupational therapy (OT) services. He will also most like continue to speech therapy.

I love my little Ryan and I’m very thankful that I listened to my mommy instincts and continued to seek out help for him. All research shows that early intervention is extremely beneficial it helping with the long term aspects. I’m still excited to see what his future holds and who he will become.

Ten Things

This has been sort of rough weekend. Even though I knew Ryan had some developmental delays and I had suspicions since December that he was exhibiting some autistic behavior, it’s still hard to process. It’s hard for me to wrap my brain around everything. No longer is the battle waging if  I’m just that paranoid.  This weekend, I have come to realize that I am control freak. I like to be in control. When something is wrong, I want to fix it. I consider myself to be solution oriented. I don’t like to dwell on problems, I just want to figure how the best solution to fix it. It’s been sobering to realize that this is probably not going to be in my control to fix. I consider myself a “mature” Christian, but even still, God is reminding me that He is in control and not I. I fear that is something that I will always struggle with in my Christian walk. I can do nothing but leave Ryan is God’s hand and to parent Ryan the best way I can. Since Ryan’s conception I always prayed these verses:

Psalm 139

13 For it was You who created my inward parts;
You knit me together in my mother’s womb.
14 I will praise You
because I have been remarkably and wonderfully made.
Your works are wonderful,
and I know this very well.
15 My bones were not hidden from You
when I was made in secret,
when I was formed in the depths of the earth.
16 Your eyes saw me when I was formless;
all my days were written in Your book and planned
before a single one of them began.

After having Kaylen early, I struggled with enjoying each moment of pregnancy knowing full well that pregnancy doesn’t always turn out how you expect. Again, I couldn’t control my pregnancy, but these verses gave me a sense of peace that God had planned each of Ryan’s days before they had begun. It has/always will be His plan. As I work through my emotions this weekend, my mind keeps going back these verses. For as many times as I have to, I’m going to keep giving Ryan over to God.

I have spent a part of this weekend spending researching autism. I had research it briefly before, but I didn’t want to spend much time researching because I didn’t want to be analyzing Ryan’s every behavior and trying to draw a connection to autism. Now knowing that he has some red flags, I want to know more so that I can prepare myself for what to expect, things to look out for, and what we can do for Ryan to help him thrive. I keep noticing this weekend how much Ryan licks objects-like he is constantly licking our TV, tables, toys, etc.   It was interesting to find that can be a sign of autism. My first concerns with Ryan happened when I was told on a few separate occasions by different people that Ryan doesn’t really interact with other kids – that he tends to always be by himself and play alone. Couple that with the fact that his speech is delayed, he doesn’t point, he is extremely fascinated with wheels (objects that will spin), and he stares off into space quite frequently, there are some legitimate concerns for autism. As a side note, I’m still not 100% convinced or going to label Ryan as autistic, but I don’t think it is going to help Ryan if I bury my head in the sand and pretend like this might not be a very real reality for him. I am so glad that I did trust my instincts because everything that I have been reading says Early Invention is extremely helpful. Ryan’s next appointment is this Friday. I came across this powerful article and I just felt compelled to share. The one article alone gave me so much insight more that a lot of other articles I was reading.

Keep praying for Ryan and for us as we begin this journey-whether it ultimately leads us to the fact that it is Autism or that we truly just have a stubborn child on our hands that just needs more time-we do need the prayers! On a positive note, Ryan finally FINALLY, said and signed more! It brought tears to my eyes!

Ten Things Every Child with Autism Wishes You Knew

http://www.autismspeaks.org/family-services/tool-kits/100-day-kit/ten-things-every-child-autism-wishes-you-knew

Some days it seems the only predictable thing about it is the unpredictability. The only consistent attribute – the inconsistency. There is little argument on any level but that autism is baffling, even to those who spend their lives around it. The child who lives with autism may look “normal” but his behavior can be perplexing and downright difficult. Autism was once thought an “incurable” disorder, but that notion is crumbling in the face knowledge and understanding that is increasing even as you read this. Every day, individuals with autism are showing us that they can overcome, compensate for and otherwise manage many of autism’s most challenging characteristics. Equipping those around our children with simple understanding of autism’s most basic elements has a tremendous impact on their ability to journey towards productive, independent adulthood. Autism is an extremely complex disorder but for purposes of this one article, we can distill its myriad characteristics into four fundamental areas: sensory processing challenges, speech/language delays and impairments, the elusive social interaction skills and whole child/self-esteem issues. And though these four elements may be common to many children, keep front of-mind the fact that autism is a spectrum disorder: no two (or ten or twenty) children with autism will be completely alike. Every child will be at a different point on the spectrum. And, just as importantly – every parent, teacher and caregiver will be at a different point on the spectrum. Child or adult, each will have a unique set of needs.

Here are ten things every child with autism wishes you knew:

I am first and foremost a child. I have autism. I am not primarily “autistic.” My autism is only one aspect of my total character. It does not define me as a person. Are you a person with thoughts, feelings and many talents, or are you just fat (overweight), myopic (wear glasses) or klutzy (uncoordinated, not good at sports)? Those may be things that I see first when I meet you, but they are not necessarily what you are all about. As an adult, you have some control over how you define yourself. If you want to single out a single characteristic, you can make that known. As a child, I am still unfolding. Neither you nor I yet know what I may be capable of. Defining me by one characteristic runs the danger of setting up an expectation that may be too low. And if I get a sense that you don’t think I “can do it,” my natural response will be: Why try?

My sensory perceptions are disordered. Sensory integration may be the most difficult aspect of autism to understand, but it is arguably the most critical. It means that the ordinary sights, sounds, smells, tastes and touches of everyday that you may not even notice can be downright painful for me. The very environment in which I have to live often seems hostile. I may appear withdrawn or belligerent to you but I am really just trying to defend myself. Here is why a “simple” trip to the grocery store may be hell for me: My hearing may be hyper-acute. Dozens of people are talking at once. The loudspeaker booms today’s special. Music whines from the sound system. Cash registers beep and cough, a coffee grinder is chugging. The meat cutter screeches, babies wail, carts creak, the fluorescent lighting hums. My brain can’t filter all the input and I’m in overload! My sense of smell may be highly sensitive. The fish at the meat counter isn’t quite fresh, the guy standing next to us hasn’t showered today, the deli is handing out sausage samples, the baby in line ahead of us has a poopy diaper, they’re mopping up pickles on aisle 3 with ammonia….I can’t sort it all out. I am dangerously nauseated. Because I am visually oriented (see more on this below), this may be my first sense to become over-stimulated. The fluorescent light is not only too bright, it buzzes and hums. The room seems to pulsate and it hurts my eyes. The pulsating light bounces off everything and distorts what I am seeing — the space seems to be constantly changing. There’s glare from windows, too many items for me to be able to focus (I may compensate with “tunnel vision”), moving fans on the ceiling, so many bodies in constant motion. All this affects my vestibular and proprioceptive senses, and now I can’t even tell where my body is in space.

Please remember to distinguish between won’t (I choose not to) and can’t (I am not able to). Receptive and expressive language and vocabulary can be major challenges for me. It isn’t that I don’t listen to instructions. It’s that I can’t understand you. When you call to me from across the room, this is what I hear: “*&^%$#@, Billy. #$%^*&^%$&*………” Instead, come speak directly to me in plain words: “Please put your book in your desk, Billy. It’s time to go to lunch.” This tells me what you want me to do and what is going to happen next. Now it is much easier for me to comply.

I am a concrete thinker. This means I interpret language very literally. It’s very confusing for me when you say, “Hold your horses, cowboy!” when what you really mean is “Please stop running.” Don’t tell me something is a “piece of cake” when there is no dessert in sight and what you really mean is “this will be easy for you to do.” When you say “Jamie really burned up the track,” I see a kid playing with matches. Please just tell me “Jamie ran very fast.” Idioms, puns, nuances, double entendres, inference, metaphors, allusions and sarcasm are lost on me.

Please be patient with my limited vocabulary. It’s hard for me to tell you what I need when I don’t know the words to describe my feelings. I may be hungry, frustrated, frightened or confused but right now those words are beyond my ability to express. Be alert for body language, withdrawal, agitation or other signs that something is wrong. Or, there’s a flip side to this: I may sound like a “little professor” or movie star, rattling off words or whole scripts well beyond my developmental age. These are messages I have memorized from the world around me to compensate for my language deficits because I know I am expected to respond when spoken to. They may come from books, TV, the speech of other people. It is called “echolalia.” I don’t necessarily understand the context or the terminology I’m using. I just know that it gets me off the hook for coming up with a reply.

Because language is so difficult for me, I am very visually oriented. Please show m how to do something rather than just tell me. And please be prepared to show me many times. Lots of consistent repetition helps me learn. A visual schedule is extre helpful as I move through my day. Like your day-timer, it relieves me of the stress of having to remember what comes next, makes for smooth transition between activities, and helps me manage my time and meet your expectations. I won’t lose the need for a visual schedule as I get older, but my “level of representation” may change. Before I can read, I need a visual schedule with photographs or simple drawings. As I get older, a combination of words and pictures may work, and later still, just words.

Please focus and build on what I can do rather than what I can’t do. Like any other human, I can’t learn in an environment where I’m constantly made to feel that I’m not good enough and that I need “fixing.” Trying anything new when I am almost sure to be met with criticism, however “constructive,” becomes something to be avoided. Look for my strengths and you will find them. There is more than one “right” way to do most things.

Please help me with social interactions. It may look like I don’t want to play with the other kids on the playground, but sometimes it’s just that I simply do not know how to start a conversation or enter a play situation. If you can encourage other children to invite me to join them at kickball or shooting baskets, it may be that I’m delighted to be included. I do best in structured play activities that have a clear beginning and end. I don’t know how to “read” facial expressions, body language or the emotions of others, so I appreciate ongoing coaching in proper social responses. For example, if I laugh when Emily falls off the slide, it’s not that I think it’s funny. It’s that I don’t know the proper response. Teach me to say “Are you OK?”

Try to identify what triggers my meltdowns. Meltdowns, blow-ups, tantrums, or whatever you want to call them, are even more horrid for me than they are for you. They occur because one or more of my senses has gone into overload. If you can figure out why my meltdowns occur, they can be prevented. Keep a log, noting times, settings, people, activities. A pattern may emerge. Try to remember that all behavior is a form of communication. It tells you, when my words cannot, how I perceive something that is happening in my environment. Parents, keep in mind as well: persistent behavior may have an underlying medical cause. Food allergies and sensitivities, sleep disorders, and gastrointestinal problems can all have profound effects on behavior.

Love me unconditionally. Banish thoughts like, “If he would just……” and “Why can’t she…..” You did not fulfill every last expectation your parents had for you and you wouldn’t like being constantly reminded of it. I did not choose to have autism. But remember that it is happening to me, not you. Without your support, my chances of successful, self-reliant adulthood are slim. With your support and guidance, the possibilities are broader than you might think. I promise you – I am worth it. And finally, three words: Patience. Patience. Patience. Work to view my autism as a different ability rather than a disability. Look past what you may see as limitations and see the gifts autism has given me. It may be true that I’m not good at eye contact or conversation, but have you noticed that I don’t lie, cheat at games, tattle on my classmates or pass judgment on other people? Also true that I probably won’t be the next Michael Jordan. But with my attention to fine detail and capacity for extraordinary focus, I might be the next Einstein. Or Mozart. Or Van Gogh. They had autism too. The answer to Alzheimer’s, the enigma of extraterrestrial life — what future achievements from today’s children with autism, children like me, lie ahead? All that I might become won’t happen without you as my foundation. Be my advocate, be my friend, and we’ll see just how far I can go.

©2005 Ellen Notbohm

Working through the emotions…

So the long time followers of my blog have probably notice a shift in my blog focusing  on NICU resources. I recently became a Parent Support Volunteer at the NICU where Ryan was born. Before Ryan had left the NICU, I always knew it was something that I wanted to do – to give back to other families in the NICU. I must say it was a whirlwind of emotions coming back to the NICU for the first. Just sitting in the training, hearing codes over the intercom system made my heart race. After the training was finished, they gave a us a tour of the NICU. It’s a rather large NICU with the capacity to fit 48 babies. They have 4 different pods – within each pod there are only single and double room with a nurse’s station in the middle. I only had seen two of the different pods while Ryan was in the NICU and certainly never wandered around any of the pods during Ryan’s stay. It was weird revisiting the rooms he had stayed it. They were empty. I just kinda got this eerie feeling and my breath caught in the back of my throat. I didn’t want to step foot in those rooms and I haven’t had to yet. Parents that experience a traumatic NICU stay often suffer from post traumatic stress disorder (PTSD). While, I don’t believe that I have full blown PTSD or even a moderate class of PTSD, I have realized that I do have certain triggers and I don’t know if it possible to fully recover from them. My brain tells me that I shouldn’t still have these feelings, but my heart and soul know that I have them. I just don’t think you can ever really just “get over” seeing your child lay helpless and suffer and know there was NOTHING you could do take away the pain. However, with all the said, I must say that I have experienced a lot of healing since becoming a volunteer. Going back to the training night, I cried big tears and heart broke again telling my story. I realize I still have a lot of emotions in my birth stories and Ryan’s NICU stay. I think that in telling my story to a group of other moms who completely understand what I went through was my first step in healing. After a few trips to the NICU, my heart began to feel lighter and no longer was the NICU of place of pain, but it has now become a place of hope, healing, and miracles. It has always been that, but I had only felt a lot of the pain that the NICU brings to a mother’s heart before. I love every minute of the being in the NICU. I feel like I am giving back. It’s one of the few times I am away from my family that I don’t feel the guilt that I may be missing out of something at home. As the director expressed to me so beautifully with empathy, “It fills your cup.” Being a parent support volunteer does fill my cup and overflows into a healing place in my heart hoping that by just listening to other families tell their own stories that I might be helping to heal their hearts as well.

One of things that I was also scared to do was look at the pictures of Ryan’s CD that we mailed to us after we left. These were pictures that Parent Support Volunteers took along with Ryan’s nurses. I was afraid to see some of the pictures on the desk fearing they would bring back some terrible emotions. I often held a lot of my fears about Ryan inside. I was also too afraid if I said my feelings outloud that somehow they would become reality. After going around one night in the NICU to take pictures of the babies for the first time, it gave me courage to look back at our disc of picture. Before that night, I had only looked at it briefly once when it arrived. This first picture is of Ryan when he battled NEC (infection in his bowels) which was the hardest part of his NICU stay. I was holding Ryan in this picture, his nurse thought his little hands under his chin were so cute. That is an anderson tube in his mouth. It was sucking everything out of his belly.

Here a picture a nurse took while we were away. He looks so sweet holding onto his soothie pacifier. This was probably a few days before he was released.

Here is one I believe a Parent Support Volunteer took very shortly after his birth. I love this photo and his tiny little feet.

While some people will never understand my emotions and the pain I have associated with the NICU and probably would just tell me I should be over it by now, I’m okay with where I am. I am thankful to be a part of such a wonderful program that has also allowed me to heal more by serving.

My Story…

Becoming a Parent Support Volunteer for the IMC NICU, I was asked to write a short summary to be posted in the Parent’s Lounge NICU to give them an opportunity to get to know the Parent Support Volunteers better. Here is my “short” story:

On August 22, 2008 our lives were changed forever by the early arrival of our precious baby girl, Kaylen. She was born at 34 weeks via c-section due to preeclampsia. The pregnancy started off as high risk due to an autoimmune condition that I have. I was monitored very closely throughout my whole pregnancy. We were overjoyed when we found out we were pregnant. I had been told previously that I might not ever be able have children, so Kaylen was an unexpected but most welcome surprise. About 11 weeks into my pregnancy, I awoke around 3 am to kiss my husband goodbye as he was getting ready for work, when I laid back into bed, I started hemorrhaging blood. We quickly went to the ER to discover that our baby was okay, but my placenta had separated about 50%. A most insensitive doctor sent me home with a prescription of Lortab and told me that I had a 50% chance of miscarrying my child. Praise God, my placenta healed completely. After 32 weeks of pregnancy, I began exhibiting my first signs of preeclampsia: I gained 10 lbs in two weeks, my blood pressure was up, and swelling of my body. I started NST (non-stress tests) twice a week to make sure my daughter was doing well. At my last NST, I had some protein in my urine. They called me back the next day to come pick up supplies 24 hour urine test. Unfortunately, by the time I went in, I was feeling horrible and was a crying mess. My perinatologist ran more urine and blood tests, examined me, and recommended that I be delivered that day. He called my OB and sent me over to a hospital. That hospital’s NICU was full so they sent me over to another hospital. I must add through all of this, I was complete denial about even the possibility of giving birth that night. I just couldn’t comprehend and was not prepared mentally to have a premature baby. My OB didn’t come to hospital until 8 pm that night (which also led me to think that I wouldn’t be delivered that day) but at 8:56 pm, my daughter was born to us at via an emergency c-section. I remember watching from the table as they cleaned her off and the NICU nurse letting me give her lots of kisses before she was rushed off to the NICU. Little did I know at that time I wouldn’t be able to even see her, let alone hold her, until 3 days later. It was pure heaven when I got to hold my baby girl for the first time. Luckily, her complications were few. She was severely jaundice due to our ABO blood incompatibility, but her bilirubin stabilized, she learned to eat quickly, and she was home after 10 days in the NICU.

Fast forward, 19 months later, I was pregnant again with my second child, Ryan. I was 33 weeks along in my pregnancy when my water broke. Not even two months before, I had made a major move from Las Vegas to the Salt Lake area due to a job offer. I had given my two weeks’ notice to my job in Las Vegas and headed up to Salt Lake, pregnant, with no family in the area, and pretty much being a single mom to my 17 month old toddler while my husband took care of our affairs back in Las Vegas. Again, this was a high risk pregnancy due to my autoimmune condition. I really didn’t have any issues with this pregnancy. In the back of my mind, I did fear getting preeclampsia again, but I never exhibited any sign of preeclampsia. Because of my issues with my first pregnancy, I continued with the NSTs twice a week until my water broke unexpectedly. I was scared and nervous. I knew what it meant to have my water break at 33 weeks and I knew I was in for another NICU stay. I was able to hold off labor for another 3 days giving the chance for the steroid shots to help improve Ryan’s lung function (and giving my husband time to drive here from Las Vegas). Ryan was born to us at 11:00 am on March 30, 2010 via c-section. He was also severely jaundiced. He was on the CPAP for just one day and on oxygen for 3 days. After about 10 days in the NICU, Ryan came down with an infection in his bowels (NEC – which is rare for someone born after 33 weeks) that was caught early enough that he only had to endure seven days of no eating, a PICC line, and antibiotics before he was better again. He quickly learned how to eat and nurse well after that episode, so in another week, after 29 days in the NICU, he was finally released.

Currently, Kaylen is a healthy, happy, constantly talking 3 ½ year old. Ryan is a healthy, active twenty-two month old who loves dinosaurs and spends a lot of his day “roaring” with his toys. We discovered that Kaylen has food allergies to eggs and dairy and Ryan is allergic to nuts and is sensitive to milk. He was diagnosed with asthma but treated with daily medication, he is does great.

I very blessed and lucky to have had Ryan at IMC with the Common Bonds program. We literally had no family here and I found strength from the volunteers from Common Bonds in dealing with Ryan’s NICU stay. That is why I have a heart to serve other NICU families through the Common Bonds program to offer hope and encouragement to other families with an understanding heart and empathy for their situation.

Kaylen, 3 days old

Ryan, 3 days old

Happy 1st Birthday, Ryan! Reflecting on the past year…

I can’t believe that a year ago today, I was 33 weeks pregnant and in a few days would give birth to my son, Ryan Scott Grover. This March has been an emotional month for me. I keep thinking back to when I gave birth to this precious boy of mine and the NICU journey of ours. At times, I would even say that it haunts me. After reflecting this past month, I am coming to the conclusion that I don’t know if I fully processed my feelings while he was in the NICU. With all the changes in our family and lives this year, I have been, just running from one circumstance to the next just trying to keep up. While I know that Ryan is VERY fortunate that his complications were few and his NICU stay was relatively short (in comparison to others) a mere 29 days, it was still heart wrenching. I will never forget seeing IVs in his head, an Anderson tube down his throat, and hearing a doctor tell me when we learned he had an infection in his bowel “This could be very devastating.” I still can’t shake the feeling of helplessness I felt at seeing my baby boy suffer and knowing that I could do nothing for him. Boy, how I treasured the moments when I got to hold him and have kangaroo time with (skin to skin time with mommy)…  minutes after having him on my chest, I would start fall asleep. Those were the only times while he was in the NICU I felt true peace. Ryan would just snuggle down on me and he would always fall asleep too. Just feeling the warmth of his skin on mine and how at peace he was with his mommy, it felt like I was doing something for him. I couldn’t  take away all the poking and prodding and all the long nights when I couldn’t just hold him when he wanted me, but, knowing that I could comfort him and make it better for him for just a little while… even if just for a few minutes out of the entire day. I know for most these will be just words on a paper, but I know for all the other NICU mommies, you will know that pain that I am trying to express, but words will never suffice.

And as I look into the eyes of my baby boy who will very soon no longer be baby, I am incredibly blessed.  He can melt me with those big brown eyes of his. I think that Ryan may be a little small for his age and developmentally may be a little behind as well, he is right on target considering he was born seven weeks early. He’ll be one on March 30th, but was not supposed to born until May 15th. He eats table food now and refuses to eat baby food now. He can say mama and dada. He claps his hands. He loves to mimic as well and has been doing that for some time now. He gets into everything these days. I think he’s probably a couple of months away from walking, but that doesn’t stop him. He seems to be very stubborn and strong-willed. He lights up when he sees his big sister, Kaylen. It’s been fun seeing them interact more and more each month.

One question that I have been asked given his prematurity and the fact that Kaylen was premature as well is would we have any more? Would we put ourselves though another NICU stay?  I can’t see the future or what God has in store for us, but I don’t regret any of it. I have been blessed beyond words with these two very precious gifts. As I tell my kids each night: You’re perfect just the way God made you and He made you very special. I believe that He formed them perfectly and I trust in God’s timing in ALL things.

Happy Birthday, Ryan! I love that God chose me to be your mommy. May you always know just how deeply you are love and what a precious gift you are to us.

Psalm 139

13 For it was You who created my inward parts;
    You knit me together in my mother’s womb.

14 I will praise You,
    because I have been remarkably and wonderfully made.
    Your works are wonderful,
    and I know [this] very well.

15 My bones were not hidden from You
    when I was made in secret,
    when I was formed in the depths of the earth.

16 Your eyes saw me when I was formless;
    all [my] days were written in Your book and planned
    before a single one of them began.

Ryan – 20 Weeks

 

Ryan is now five months old. He’s smiling a lot now and making a lot more noises. He loves to get your attention and he will just smile at you and do some babbling. His legs are getting much stronger now and he can stand up on his legs (with assistance, of course). He seems to like being able to stretch them out. He can hold up his head for longer periods now and his back muscles are gaining strength. He does well sitting in his jumperoo – although he’s still not quite too sure what to do with all the toys.  I probably haven’t been as consistent as I am supposed to be in his tummy time, so he hasn’t roll over yet. He really doesn’t like being on his stomach and seems to dislike it more as time goes along, but I just let him hoot and holler for a little while. There hasn’t been any huge changes in the past month – the most noticeable is just how he is started to interact with us more by all of his smiles and all of the noises he likes to make. He has also started kicking his legs around when he gets excited or  happy. I love those little legs kicking about! It will be interesting to see how he progresses through the next month. I’m loving every minute of having Ryan. I love coming home and holding him and watching his smile go ear to ear when he recognizes it is mama talking to him. He has such a sweet smile. I let him give me slobbery kisses – though not intentional on his part – but I love them none the less. 🙂 His big sister just adores him as well. Today, we went out to eat after church, and I left Ryan in the booth so his dad could get him. I walked Kaylen past him and she started to get all frantic saying “baby, baby, baby” and pointing at Ryan. I had to tell her that we weren’t going to leave Ryan there as I chuckled along with the people in the booth next to us. How cute she is as his big sister! 

And yes, he is still a thumbsucker. I have given up on the battle of thumb-sucking for now... How precious he is though!