A service Project to Help Heal

A week or so before we left for Utah I was able to perform a service for a very sweet family that I had randomly run into. There as a link from my blog to hers and I followed it.  Then I saw a bunch of random stuff for fundraisers after I found her blog.

Jennie ( the mom) was diagnosed with placenta previa AND placenta acreta. Not only was she at risk for losing her son, this was her ONLY son. She has 5 girls. She was put on hospital bed rest for a LONG time. ( I think 8 weeks)

She knew she would deliver early and she did. Her son was in the NICU. I offered to take some NICU photos. For those that know me, I am NOT the best at the NICU and was not sure what possessed me to take them. But it was so healing to me.  I realized that I can do hard things

Here are some of my favorite photos.

*Disclaimer: PLEASE do not steal these photos. They belong to me and Jennie. If you want to use them for any reason, please contact me at Nancy.brown05@gmail.com*

The last one is one of my favorites because technology REALLY did improve this families ability to enjoy their little man. The dad was home with his kids and they all had some kind of bug and the IPAD was able to let them all see what was going on.

This was such a great experience for me and will probably add it to my list of things to offer. I hope you enjoy.

Oh and one a NICU mom always one. It almost felt like I was back in a time and I knew what I needed to do. I think they turned out pretty decent. You?


Next up: IEP and DDD. what a LONG day!

Five minute- Friday- What mama did

I am linking up with a new group of women that I have found. Basically they ask you to write for five minutes and that is it. Just get the words flowing.  You can find more women HERE!

The theme is “What mama did” ( don’t hate me for the english!)

Two of the most memorable of my mom in adulthood is centered around my Ty. I am sure she doesn’t remember but I do. And that is all that counts.

The night that Ty was born ( well morning) my mom and dad got in a car and drove 3 hours to be in a hospital room where there was nothing anyone could do. Dallas was with Tyler and so the first people I saw were my parents. I didn’t know when they got there. I only know that they were there. I knew my parents were crying and they focused all they could on me and making me feel loved. After a very heartfelt blessing everyone left. I was left with just my mom, who was sleep sitting in a chair. I was talking to her and she kept reassuring me it was fine. It was a simple act, but I needed it.

The next happened a few months later. I don’t remember why but Ty was being poked for the millionth time for a procedure and I was standing at the edge of the bed/incubator.  I couldn’t handle it and I broke down. There was my mom standing at the bottom of the incubator and she took over where I fell short. I was very thankful that day.

There are many times that they ( mom AND dad ) came up. Major surgeries they would do what they could. Only the ones where we lived in Arizona was it just us. Even though they are far away I know they think of us often.

For the fact that she is here and I have a mom I am thankful.

Thanks mom.

Liebster Award- Special Needs Edition

This Journey in our life nominated our blog for a Liebster Award. As I was browsing through her blog I realized just how valuable her blog will be to us! Her daughter is visually impaired from none other than the dreaded ROP!

In participation with the official Liebster Award rules, I will get to share 11 random facts about Tyler, and then sharing the answers to Rachel’s questions. I hope you guys enjoy the read, learn something new about Tyler and get to know more Special needs parents!

11 Random Tyler Facts 

1. If you read him a book and he likes it, he will have it memorized. Annoying, but it tricks people into thinking he can read. Sneaky toot! ( But he can read, just not all some thinks he can!)
2. Holidays are HUGE for him. He loves to have parties. So much so, that dinner every night is a special tea party in which we all get to take “Nibbles.” He also knows when all the major holidays are and asks frequently what we are doing for them. 
3. Tyler doesn’t drink anything but Dr. Pepper or Coke. Basically anything without fizz makes him gag due to sensory issues. We try, but after getting caffeine every day of your life for a year, it doesn’t phase him. 
4. Tyler LOVES jokes. He makes them up daily and about everything and laughs so hard and so long. He loves making people laugh. 
5. He loves movies. He goes back and forth between Disney Junior everything, to Sesame Street to the dreaded Barney. I am fine with all but Barney.
6. He has weird names for everything. He calls his school the flying fairy school. My mom is Grandma the Old Lady. I am Mommy the Kelly the girl. He was Tyler the professor for well over a year. He is now Tyler The Brown. And we don’t get to deviate from that name without him correcting us. 
7. Ty loves Goofy and Mickey Mouse. 
8. Ty thinks he is a pirate. He thinks he is Jake the Pirate and that his Vision teacher, Jenny, is also a pirate. He talks like a pirate when he talks about Jenny.
9. He loves school and loves to learn but really struggles and gets angry and says he cannot do it any more when he has to work really hard. 
10. He is a great bowler
11. He LOVES to ride bikes and loves to have friends and loves to be where people are. 

The questions that Rachel at This journey Our life asked are below: 

Questions for nominees to answer:
1.  When did you embark on your special-needs parenting journey? (share your child’s diagnosis story)

         This will be the quick version because we have it written out ( twice) by both of our perspectives soon after it happened. But around May of 2005 we found out we were pregnant. I have endometriosis and was told I would probably not have any kids or would have trouble conceiving but he was a welcomed surprise. After the shock wore off, we realized we would be getting a Christmas baby and jammed a semester of school in while I was pregnant. I had complications from the start and the pregnancy was VERY hard. We found out the first of September that we were having a boy and less than 21 days later he was born. He was 25 weeks and 3 days.  He suffered a IVH grade 3 and 4, hydrocephalus, ROP and a spent 93 days in the NICU. Since, he has been diagnosed with Cerebral Palsy, hydrocephalus, is legally blind and has some sensory issues, developmentally delayed and has speech issues.  He is now almost 8 and in the first grade. 

2.  How do you balance spending time with your other (non-special needs) children? (if applicable)

      We do have another baby. Lucky for us, when we decided to have another baby we had massive secondary infertility issues. At the time, I didn’t think it was “lucky” but it has allowed me to be Grayson’s mom because Ty is in school a full day. We take Grayson with us to all of Tyler’s appointments and he loves being with Ty. He tries to keep up with him and wants to do everything. I often feel a little guilty that I don’t get as many activities to do with Grayson because with Tyler we had therapy 3 times a week. We had people in the home for therapy and fun music classes and we don’t have those with Grayson. Grayson is also a very hard baby. He tends to be a little more needy so I do feel a little frustrated when I don’t manage everything just right. But we are happy he is here. And as far as adding more to make me have to manage better, that won’t be happening. I had a hysterectomy in December, so I get to just relish the last of my babyhood with Grayson and enjoy the journey. 

3. Share an act of kindness someone has done for you or your child.

    The biggest one for us was being nominated for a Make a Wish trip last summer. Tyler wished for a trip with Mickey Mouse on a pirate boat. Because of his visual impairment the trip was just what we needed.

 But, on a even smaller but more significant act of kindness was when Tyler was invited to a birthday party. The little boy, Jake, was in our ward ( our church boundaries) and he brought an invitation over to our house and Ty was able to stay there all by himself. He was welcomed in by his mom, Christi, and he had such a good time. He has never been invited to another party and it really made my heart happy. 

4.  What is one thing you want people to realize about your life as a special needs parent?

     We have a few people in our lives that have Chronically ill kids. And while we see the struggles they live with they are not totally disabling conditions. There is no damage done to their brains or their eyes. They can, and most likely will, go on to life a fairly normal life. With being 7 and still not able to use the bathroom, we don’t have any idea how he can live on his own. He can’t make his own cereal, he can’t take care of himself while we run to the store. He can’t change the station on the TV to something. I am doing all of it for him. I dress him, change him and entertain him. Even while riding a bike, with his visual impairment I can’t just let him go. Someone has to be there to watch for cars. The “normal” things are just not possible for us.  While most things are just normal parts of life, most anything outside our daily lives have to adapted. People don’t always want to make the changes with us and we are left out. A LOT! Raising a child with extra needs is lonely and there isn’t much support by means of others not playing the “my kid is sicker than your kid” card. There are very few that get it. And don’t judge what you don’t know. There is a lot of judging when it comes to our choices at parenting . 

5.  In what ways has  raising a child with special needs affected your relationships/friendships? 

You tend to lose your “normal” kids friends. But you gain, and tend to gravitate to a few really great friends who are walking in the world you do. My best friend, Stephanie, lost her child but still seems to understand what I am feeling and why I am feeling those things. She is always there for me. And my besties Amy, oh what a life saver she is. Her husband and my husband were best friends. They have a child with Autism and I NEVER feel like I am alone when I know she is a call or a message or a Facebook chat away. 

As far as my relationship with my Husband we have really had to work at making it work. We were told the night after I saw my baby for the first time, that this would either make or break our marriage. We have had years where everything is awesome. There are times we really struggle. But we have found we HAVE to date. We need to date more than anything. The need to have time together, talk and make the right choices for our whole lives has to happen but the only way it does is by dating. If not, that is when it is REALLY hard.

6. What brings your child the most joy?

EVERYTHING. Ty gets so excited about the smallest things. He loves movies and buying a new movie would make you think he just won the lottery. Bringing him home a soda from the gas station is like Christmas. He is seriously such a awesome kid!

7. If you could describe your child in three words what would they be?

Loving, Smart and Stubborn

8. What aspect of your child’s special needs has been the hardest to accept?

His vision is really having a bigger toll on us. Realizing that he can’t see what we thought he could and that more things needs to be adapted than we thought has been really hard. Some of the things said in his CLVE were so hard to hear. The other part is accepting that we JUST might not be able to have him life on his own and be married with kids. But that is far in the future. For now and for the current time, his vision is the hardest. 

9. If you and your child could take a dream vacation where would you go?

We DID take a dream vacation, but knowing how much we loved it we would love to go back on a Disney Cruise. There are many things that we know now that we can make his experience even BETTER by doing it again! 

10. What’s the most important lesson your child has taught you?

The biggest lesson is love. He knows no hate at all. Nothing. He understands being left out and being sad, but he doesn’t understand when people are being mean or saying mean things. He doesn’t care. He just loves. Innocently loves. It also turns into innocent faith. 

11. What advice would you share with a parent just beginning their journey of parenting a child with special needs?

I would tell them that no one knows that your child will do. No one knows what things will happen. No textbook will tell you anything. Ask a lot of questions. Read and read and read. Cry when you need to. Take a break when you need to. Take a break from therapy if you need to and most of all, you are doing the best you can. If other’s want to judge you, let them. Your shoes are full. They are uncomfortable to wear and they aren’t always cute. No one wants to wear them. So do the best you can. Oh, and it’s OK to have a bad day. It’s OK to feel negative and it is OK to be a little angry and hateful and bitter for a while. It gets different and easier to deal with. 

Once a NICU mom.....

ALWAYS a NICU mom.

No matter what there are so many things I think about that are out of the "norm." I half laugh when I catch myself.

1: Grayson was feeling really hot the other day. I went to the drawer and got out the thermometer. I almost took his temperature. Not kidding! Instead I put it back and took a deep breathe and realized that this wasn't normal, he had been sleeping upstairs in the hot room and slowly backed away.

2: I have googled looking for the exact amount of poopy diapers a breastfeed baby should have. I have even clicked on images to make sure it looked EXACTLY like it should.

3: I don't mind taking him out in public if no one is around and we have LOTS of open space. Tomorrow is church and it makes me cringe to think of having people hoover..... How long is to long to wait?

4: I have looked up RSV season start times and times we can all get the flu shot. I am half tempted to require anyone who enters my house to show proof of Pertussis immunity. ( Yeah not kidding. Please family get your pertussis vaccine. And don't come to my house sick.. GOT IT!)

5: I worry about how much is going in to my kid. Not just the amount of time he feeds, the amount he feeds but exactly how many calories. Like I know how many calories and ounce breast milk is. I know how many calories formula is for and ounce. I wonder if we are gaining enough. So much so if the scale wasn't covered in my laundry room and Dallas has been around I probably would have checked to see if we have gained.

Most I worry that he is choking or not breathing. Because there is no bottle at night and it is just me he tends to sleep right next to me. I love it but hate it. There is no monitor telling me he is fine. Nothing but me to make sure he is safe from harms way.

But no worries. His temp is in the normal range... and his calories are looking good :)

Way back When- Wednesdays

Last week on my Way Back Wednesday was my husbands take on our "story." Here is mine: Same outcome... different places.

Four years ago (written for his birthday this last year) I was laying in a hospital bed being told that I was going to have to deliver my son. I was told not to yell, scream, cry, or even throw up.

My only thought......It was to early……

September 20th 2005 : I had been feeling really yucky all day. I had been up for most of the night not feeling well. Having some strange cramps and some strange discharge ( hindsight it was my mucus plug) There was something not right. I called my doctor and the nurse told me to take it easy and not do anything, that I was being a paranoid first time mom. I stayed on the couch watching TV and doing homework. Dallas came home early from work and he had to go to a job interview that night. I decided to go to work. I was sitting at work so no big deal. He was going to drop me off and when my shift was over he would come and get me. Big Brother season finale was on and we were gonna watch it together. I got off work and he was not there yet. I called him and he was on his way so I decided to walk and meet him. BIG mistake. I started to cramp that evening but the Nurse earlier said that if there were less than four in an hour then it was not a big deal. So I was up and down with the feeling that I needed to go to the bathroom. I couldn't go but I really had to. I decided to eat something. It all came back up. I keep getting sicker and sicker as the night went on.

We decided that I had a bladder infection and that we needed to go to the ER. We decided to go to Alta View so that Dallas and his Dad could give me a blessing. ( At the time they lived close by Alta View) Dallas went into the ER and told them that I was sick and outside so if they could help me. They took me into the Labor and delivery part of the hospital.

I had the most wonderful nurse. Her name was Windy. She had me take a urine sample and put on a monitor. The monitor didn’t pick up anything including a heart beat. They had to get the doppler out just to find a heart beat. I could feel Tyler kicking the whole time and knew he was alive but they couldn't find him. They figured I had a bladder infection. They were not in a hurry to get things moving knowing a bag of fluid and antibiotics would send me on my way. But it was more than that.

I was having a baby!! And it was too soon.

The room went crazy. Nurses were everywhere and doctors were called. I was laying there so confused and thinking that it was to early. That he was not really coming and they were wrong. They tipped my bed upside down and started me on Magnesium to stop the labor and gave me shots of steroids to help Tyler's lungs.

There was nothing they could do he was coming.

15 week early.

It was to early. I knew deep in my heart that it was to early. If he came now he would not make it. I would go home empty handed with a broken heart.

They called maternal life flight to come and get me. They got there and I was to far dilated to take on the helicopter. For two hours they sat there discussing what they should do with me. At that point they called pediatric life flight to take my extremely tiny infant somewhere where they could help him. You see, we made the wrong choice. We went to the wrong place. We went someplace that didn't take care of sick babies.

With me staying and Tyler going they decided to do a c-section at that point and do it without being in an emergency situation. My water had not broken yet. His feet were hanging out. He was coming. The nurse put in my catheter and my water broke.

It became an emergency situation.

As I was wheeled into the OR I had to leave the love of my life behind with no idea how or what the future held for our son. We loved him so much but had never met him. He was too soon!!! As I moved onto the operating table from my bed I had another contraction. Up till this point I had no pain medication. The anesthesiologist decided that I had had enough and didn’t even wait to start putting me under. The last thing I remember was them draping my belly.

Waking up I immediately asked for Dallas and they let him in and he told me that they were working on him and that he had seen him and that he was alive. Dallas had been watching them do CPR on our little son. I then went back to sleep. On the way back to my room I remember being wheeled past my parents and everyone telling me that he was beautiful. They were going to let me see him before they took him to LDS or PCMC. They wheeled him into my room. I couldn't really see him because I had to take my contacts out to have surgery. But Dallas gave him a blessing and I KNEW that we would be okay.

That day our family would be started that day.

Tyler Kenneth Brown, my sweet, amazing and miracle son was born at 1:24 AM on September 21st 2005. He weighed 1 lb 11oz. He was 13 inches long. He was life flighted by helicopter to LDS hospital where he would stay for 30 days. He would have one surgery, and suffer from grade 3 and 4 brain bleeds. He was transferred to have a reservoir placed for Hydrocephalus. He would stay at PCMC for 63 days. He would endure 2 more surgeries( resevoir placement and ROP stage 3) and many ups and downs. He came home one day before his due date…. December 23, 2005.

*Picture above is the first time I held him. He was about 3 weeks old. It was before his transfer to PCMC.*

ROP

Retinopathy of prematurity. It is a dreaded word. It is one of the leading causes of blindness in babies despite more than 60 years of research. Sixty years. It is also a disease that effects every child differently and no one can really predict who will have the worst of the worst. Even a baby born at the exact same gestation can have very different results.

So what is ROP?

It is a disease that affects prematurely born babies. It is NOT found in full term infants. It is thought to be caused by disorganized growth of retinal blood vessels which may result in scarring and retinal detachment. ROP can be mild and may resolve spontaneously, but may lead to blindness in serious cases. The growth of the abnormal vessels causes the retina to contract and the abnormal vessels causes retina detachment which then leads to blindness.

Who is at risk?

• Gestational age and low birth weight : The lower the infants birth weight and gestational age the more likely they are to develop ROP AND have to have it treated.
  
• Supplemental oxygen: Though the NICU has increased in its oxygen treatment the need for supplemental oxygen in the little tiny babies is just a fact of life. The use of new technology and younger gestation babies being born still requires oxygen assistance and therefore still at risk for ROP.
• Vitamin E deficiency: though this is still being looked at in medical trials some infants have been treated with higher levels of vitamin E and the levels of ROP has been lower.
  
• Race: Those darn little white males strike again. They are at higher risk for developing severe ROP that results in retinal detachment than any other race.
  
• Indomethacin: The meds used to help close many pre term infants PDA have also been linked to increasing their chance of SEVERE ROP.
  
• Light levels: In the last few years many NICU's have "turned off the lights" so to speak. Keeping the lights low and sound levels down have seemed to decrease the ROP levels.
  

Other risk factors include: Brain bleeds or IVH's, blood transfusions, mechanical ventilation, and anemia. All factors that Mr. Tyler had. In fact the only major risk factor he did not have was the PDA meds.

So what are the stages of ROP?

stage 1: blood vessels not completely developed

stage 2: enhanced grow of blood vessels (more than normal)

stage 3: scar tissue, blood vessels affecting the vitreous eventually + sign: additional observations (bleeding, well filled blood vessels, rigid pupil...)

stage 4a: partial retinal detachment (vision loss) by traction of scar tissue in the vitreous

stage 4b: partial retinal detachment involving area of best vision (severe vision loss)

stage 5: complete retinal detachment (no vision)

The below pictures shows what zone is effected.

• 

Tyler was diagnosed with zone 1 stage 3 rush disease or plus disease. Meaning they saw the change from a lower stage of ROP within just a few hours. From his first exam to zone one was about 72 hours. We had him in surgery quickly!

ROP has damaged Tyler's vision to the point of him being on the verge of legally blind. He is such a great kid that he compensates for so much of his vision loss. We have been lucky that we have had such awesome therapist for him. Aften and Martha were great with Tyler. His functional vision is still undetermined.

One of the things that his damage caused was nystagmus and we have the "cool" eye of a coloboma ( due to surgery/dr error) but it is his special eye that hold super powers.

More on those 2 conditions later. Tomorrow I have some suggestions from our friends Aften to engage our visually impaired child!

YOUR Team- In the NICU and beyond!

For many preemies a stay in the NICU is inevitable. The NICU is such a different place. I recommend to any pregnant women to sign up and take a tour of the NICU. If you find yourself there it is a VERY scary and overwhelming.

I had never been in a NICU. I don't know how I survived it. The only thing that kept me going was knowing on the other side of those locked doors was a little guy that I wanted to touch and love and hold.

The NICU is such an emotional roller coaster. Some days are UP UP and others are DOWN DOWN. Sometimes it wasn't even days. Sometimes it was hour and even minutes that the emotions change.

The NICU is different for everyone. Depending on the complications that your baby experiences and how long you are there is a big indicator of the roller coaster you experience. For us our roller coaster hasn't stopped but we were able to move onto a different ride when we left the NICU.

You have a HUGE team of doctors that you have to really feel that you can trust. When we first got to the NICU I didn't know if I could trust the set of docs we had. We quickly found ourselves some nurses that were our Primary nurses. Barb, Gerald and Brandon were our "team" of nurses. We chose them to be our primary nurses. They were SOOO good with Tyler. Tyler did so well with the boys. Brandon would read baseball magazines to him. I trusted my child with these people. I knew Barb would tell me if things were not looking good and Gerald became the Charge nurse and he really pushed for us to be able to hold Tyler.

As Tyler got sicker and the need for him to be moved AGAIN Gerald really got the ball going and he prepared us to get our kid to the next level. He also made it possible 3 weeks after Ty was born to hold him. BOTH of us. It was amazing and sad experience. In my mind, bonding with my child was suppose to happen instantly. Instead that skin to skin contact was with held.

When we moved to PCMC I was sick. I was so sick because we had a new team of doctors. We were put on team A or team B and the would pick where he is according to how sick he was. We knew we needed brain surgery so we knew it would be a long haul and we would need to trust our team.

This is when we met Marissa. Marissa is still Tyler's doctor. There is NOTHING that I can say that will give this doctor the praise she deserves. I became even closer with Marissa the first time she called at 4 am to tell me that something was really wrong.

After that morning call I relied ( and still do) rely on this doctor. She has NEVER been dishonest with me. She has always told me the truth. She has ALWAYS listened to me and has never pushed me away.

Her phone call to me was to let me know that after Ty had his brain surgery he had a seizure. It was a bad one. She said it was a few minutes long and she had to give him the max meds for him to be under control. She stayed on the phone with me while I sobbed and sobbed. I got up and pumped and headed up to the NICU as soon as I could. Marissa was called while we were there and she talked with us over our extremely snowed baby.

She was my solid solid arm in the NICU and after the NICU. Between her and Dr. Duffy and Nurse Jen I survived my motherhood so far.

Our team of docs while in the NICU were all VERY smart and very busy. But they made OUR team. Tyler still has many of these doctors today.

In the NICU you also have to find people you trust to be your nurses. One day while we were just getting the swing of how PCMC is working etc we met a nurse. A nurse that I really liked. And that I thought I knew from some where. Sure enough, we were neighbors in college. We asked her to be our primary nurse, we had Chris at night and Jennica and then who ever. We were there enough we knew pretty much everyone.

Our team of docs were there to work as a team and the end result was to get the best Tyler that we could, send him home and love him and his team at home would continue to love and help him grow.

Our Main team of docs now are the team that I trust. Its the team of Doctors that have transitioned us from the NICU to now

Dr. Walker- the very BEST neurosurgeon in the valley ( in my opinion) This man has listened to my mommy gut more than once and has gone above and beyond and has cut a vacation short to talk to a mom whith a hunch. He called when that shunt he put in was recalled. This man is my hero!

Dr. Nagle- Marrissa is seriously my HERO. I can call her and she can hear the panic in my voice and she can defuse the momminess in me and get me to listen LOGICALLY. Marissa is one of the only people who have gotten me through four years of preemiehood. Even though I moved I called Marissa a few times. She is willing to try ANYTHING for Tyler. She is the best thing that I could give to my son. A doctor who loves him and adores him.

Dr. Larsen- Originally this doc was Dr. Dries. But I really needed a doc that would work with my child not tell me he was blind. He isn't blind. Dr. Larsen did that. He was listening. He got us started on the path we are on now.

Dr. Gooch- She is Tyler's rehab doc and she is working at getting us a little more mobile and getting us back to where we need to be. We are very thankful for her.

Dr. Carrol- She is working with Dr. Gooch to help with the orthopedic problems that Tyler is having. She is doing all she can to avoid surgery and fix him up the best we can.

We will be seeing a neurologist here and also a sleep doctor. That makes up Tyler's whole team of docs. We have therapists that are included in our plan of action. But the most important part of the whole team is Tyler

All of these docs have one thing in common from the NICU to now. TYLER.

As a new mom embarking on this journey, take recommendations from your friends but know that in the end YOU chose what is best for your baby.

Find the best team that works for you!

The do's and Don'ts

Last year during our prematurity awareness month I posted a few do's and don'ts and got a lot of laughs and comments so I thought I would share for those newly googling NICU parents.

First the Do's

1. Ask me what I want to be called.I may or may not want to be called "mom." I would like to be called by my first name.

2. Send me a Polaroid of my baby when I can't get out of bed because I have had a C-section OR take pictures when I am not able to be there. For Tyler we had a disposable camera in his drawer all the time. LDS NICU also took pictures of them when we were gone.

3. When referring to my baby, please don't call him "your baby" (as if he is your baby) or "the baby." He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name. ( this was huge. The Nurses would get use to having Ty..But he was still MINE!!)

4.Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)

5. If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.

And some DON'Ts....

1.Don't Call me "Mom." Please ask me what I would prefer to be called. ( I didn't care so much about this one. I had Primary nurses that I just loved and they knew me after a day or two...but for some .. I am sure it was an issue.)

2.Don't Move the baby without telling me ahead of time, or at least meeting me at the door. ( when you get into the habit of having them in one spot going in and seeing your baby not in your spot is a little overwhelming. Ty was "kicked" out of his corner it was REALLY kinda nerve wrecking. Change during that time was SO hard.


3.Don't Tell me how I should be feeling or that I "need to be patient." Even now hearing that it is "normal" is hard to hear. It is something we are dealing with. Not you. You have NO idea how I feel.

4.Don't dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes. Having a sick baby was so different. You can't touch them or love on them like a healthy baby. Holding took a long time and he was sick. On some days he was sicker than others but he is my baby.

5. Don't assume that I don't care for or love my baby if I don't touch him. I may be very scared or overwhelmed. The first time I saw Ty I wanted to touch him but I remember being told not to rub. There were days when I was told not to touch him. But there were days I couldn't touch him. I was sad. I was scared. He was so precious but still so sick.

*These were some things we had posted on his incubator. I am sure they weren't read but I wanted them there. I wanted them to know that I had feelings and that things did effect me.