I think I can, I think I can...

This helmet business is not easy. Every time I have to put it on her head my heart breaks just a little more. Last week as I was getting ready to bring her to daycare she would not stop crying. My instincts told me it was the helmet but I thought, "Possibly it is the cold that she has or because she is teething" so I left it on. As I dropped her off, I made her daycare provider promise to take it off if she looked pained or even just uncomfortable. About 2 hours later she did call saying Isla had not been herself all morning, she was crying inconsolably and she had taken the helmet off. We called the doctor and he told us we should keep it off for the weekend (I enjoyed every moment of my helmet free baby love) until we met with him on Monday.

At the appointment on Monday, he re-adjusted the helmet and agreed that is was too tight in a few places and rubbing on her head much more than it should be. Off we went... determined to begin again with a newborn positivity.

Ugh... and now her head is becoming irritated again, ensuring that we will be making yet another trip to the helmet man in the very near future. I will continue to make trips until I am positive that Isla is not the least bit uncomfortable while wearing her helmet. I could not be more frustrated with the entire process. We have to fight to make this helmet work for our daughter, we have to fight to to get something that we hate.

However, we do know that this hurts us more than it hurts her and we will do whatever we can for her no matter how hard it is.

Cleft Lip Repair

Five days after Isla's birth we attended our first cranio-facial clinic where we met with her case manger, plastic surgeon, otolaryngologist (ear, nose, throat specialist) genetic counselor and speech and feeding specialist.

The team was assembled for us and they were ready to treat all aspects of Isla's birth defects. We weren't told much about what to expect so arriving at the clinic was honestly a bit of a shock to our systems. We had gotten about 2 hours of sleep the previous night as it was our first night at home with Isla and we were told to be at the hospital for 7am. We stood against the wall in the waiting room because all the seats were taken by parents accompanied by their beloved children. All of the children had cranio-facial abnormalities ranging from mild to severe. We must have been a sight, both standing there absolutely exhausted, holding our tiny 5.5 lb baby shocked that we were members of this new world.

Nate has one particular memory of a father bouncing his child on his knee, both child and baby were laughing and smiling. The child had a very sever facial defect but the father still poured blind love over his perfect child.

Three months later Isla had her cleft lip repair. She finally weighed 10 lbs and was approximately 3 months old, both prerequisites to undergo this surgery. The surgery took over 3 hours and we waited impatiently for the doctor to come through the doors. Although the surgery is considered "minor" it was quite the opposite to Nathan and I. Isla has been put under with anesthesia twice now and it is never easy because there is always a risk.

Once, the surgeon gave us the okay to see Isla I ran towards her cries, I think I left poor Nate behind to carry everything. I held her and I rocked with her and I cried. I was so afraid that her face would look different to me. I fell in love with the face that she was born with and it was perfect to me just as the man in the waiting room saw his child as perfect. Nate and I both agreed that having the cleft lip repair was the right thing to do for Isla but would have kept her face just the way it was if it wasn't for the health benefits and social acceptance.

At first she looked different to me and that made me cry but as she began to open her eyes I saw that it was still my baby and cried more. As each day passed the swelling went down and emerged was the face that I had loved all along.

Isla was extremely lucky to be born in the United States. Children born with cleft lips and palates in numerous other countries are not so lucky. Many children are shamed for having these defects and are forced to live in hiding. Today there are many non-profit organizations that visit these countries and perform these surgeries for free. They also train local doctors and nurses to perform these surgeries themselves after the organizations have moved on.I listed just a couple of links below for information about cleft lips and palates and the organizations that help the children born with wide smiles around the world.

www.operationsmile.org

www.smiletrain.org

http://www.marchofdimes.com/professionals/14332_1210.asp

Rockin the helmet

Isla will be on her 7th day of her helmet introduction tomorrow which means she will begin wearing it for 23 hours a day from this point on. She has napped while wearing it and tonight will be her first night sleeping with it on. Overall she is doing very well with it and while she seems to notice it she does not seem to be bothered by it.

Daddy and I are the ones having a hard time but we try to reassure each other and stay positive. I know that a month from now we will all be so used to it that it won't even be a second thought.

On the bright side, she looks adorable!

A mother's instinct...

I am a little neurotic at times, I admit, but aren't we all? I have had many irrational fears in my lifetime and pregnancy was like a moth to a flame. One irrational fear (or so I was told) that I had was cleft lips and palates. I have no idea why and I am not making this up! I have witnesses!

I couldn't shake the fear of a cleft lip. My friends thought I was crazy. It is not that I particularly thought that my baby would have a cleft lip, I was just afraid of them, if that makes any sense. I would see those commercials and just feel so sad for those children.

Skip ahead to the "big" ultrasound...It's a girl!!! We were so excited and hearing those words made it so real!

As the ultrasound technician was doing her thing and checking that the baby bean had all her parts I asked randomly "Can you see a cleft lip or palate at this stage?" Again, I didn't think she would have one, I was really just curious more than anything else. "Why?" she asked "Does it run in your family?" "Nope, just wondering." I replied.

Funny, I had asked. She assured me that she didn't see anything out of the ordinary but our stubborn daughter would not move her hands away from her face, therefor the tech could not get a good look and could not check off on her list that all parts of the anatomy were accounted for.

After a very long 2 weeks I was back in the chair, mostly just excited to get a whole new strip of ultrasound pictures and still a bit anxious even though she assured me that she saw nothing out of the ordinary. She rechecked the tiny body in my belly and declared her perfect. No cleft lip or palate she assured me.

I didn't give it another thought until the words were spoken in the operating room.

Isla was born with a unilateral cleft lip and a cleft palate.

Princess Butterfly Helmet and her EI Assessment

Miss Isla is officially the proud owner of a beautiful purple butterfly helmet. The weather today was absolutely amazing, one of those gorgeous June days that skipped us this year I guess. Not such a good day to be fitted for a helmet that you do not want on your head though. She was so worked up during the fitting, I have never seen poor Isla sweat so much...in this way she takes after daddy of course!

We were told to come prepared because the appointment would be at least an hour long, which it was at least. The helmet is sent in set to cover her head more then needed and then the doctor cuts it back, puts it on her makes some more marks, repeat, repeat, repeat. So, we brought snacks and toys and hung out in the doctor's office which we are completely used to by now. Isla despised the helmet. Each time the doctor returned to the room Isla would scream at the sound of the door swinging open. She would crawl up our chests to get away from the evil butterflies and reach out for whichever one of us was not holding her at the moment in hopes of an escape.

The helmet has it's own introduction schedule which means tomorrow she will wear it for an hour 3 times, the following day 2 hours 3 times and progresses slowly in that way until day 7 when she will begin wearing it 23 hours per day.

Isla had calmed down by the time we were ready to leave. We thanked the doctor and made our appointment for next week and Isla turned and gave doctor evil the stink eye! HAHA! She was so mad at him! Luckily he is a great doctor that comes with a great sense of humor. Through our travels we have see great doctors and doctors that should have their licenses revoked, he is one of the good guys and has been very helpful.

Isla also had her Early Intervention Assessment today. It was a very strange experience to be on this side of things for once. Professionally, I am usually the one entering the homes of worried parents armed with a big bag of toys and a mess of paperwork. Today I was the worried parent. I sat back as the therapists tested Isla in different areas as I silently cheered her on. Knowing the response they were looking for was difficult, I would imagine it might be easier to think that they were simply playing with her and that there was not intention in each activity they presented. When she didn't "pass" the first activity I became shaky. My fears leading up to today's appointment were that she would be assessed far below her age level. I know what she can do and she seems developmentally appropriate to me but that fear is there that they will come in and tell me otherwise.

No need to worry! That first activity was just about the only one she could not do. Overall she is presenting as a typically developing 9 month old! In some areas she is even presenting ahead! GO ISLA! Her strongest area was social emotional with receptive and expressive language following right behind! They were trying some scenarios just to see how she would respond knowing that they were above her age level. She did have 2 areas where she was behind, gross motor and fine motor. This did not surprise us in the least. Following her lip repair she wore arm braces for 3 weeks. During this time she could not bend her arms or practice tummy time, our pediatrician warned us that we might see some temporary delays in these areas. Also, the initial reason we were referred for Early Intervention services was for her left side weaknesses also in these areas.

So, long story short...if the services were provided based on this assessment alone she would not have qualified. But her cleft qualifies her for 1 year and the hemifacial microsomia qualifies her for 3 years. So, we decided to go ahead and continue with the therapy. We will have services 1 time per week for 1 hour.

Nate and I are so proud! She had a long day with basically no nap but still managed to rock her assessment! They would not stop commenting on how socially aware she was. She would follow the conversation by looking at each person talking and turned all the way around to look straight at Nate when we said "da-da". So proud of my girl!

That was then and this is now.

*Isla had her cleft lip surgery at 3 months old. Dr. Rothkopf of UMASS did an amazing job. I was terrified that the face I had fallen in love with would look different to me but in really he ended up making it the face that my mind had seen all along.

*Isla has had CATscans done on her head that showed us that her ear canal does not connect all the way through. The bones in her inner ear are small and malformed. She will be getting a third hearing test in January to confirm that her right ear is 100%. Any decisions on treatment will be made at that point.

*Isla's outer ear is still cupped and under developed. We taped it for many months with hopes that the small amount of cartilage that she has in her ear would harden upright but no such luck. She will have a surgery to reform her ear at about 3 years old.

*Isla's head is bulged out on one side and flat in the back which happened over time. This is called positional plagiocephaly (hers is specifically brachicephaly but I feel that plagiocephaly may be a little more commonly known). It was caused by torticolis which is a tightening of the muscles in her neck which led to her head favoring one position. Starting this Thursday she will be the proud owner of a beautiful light purple butterfly helmet. This is called helmet therapy and will hopefully round out the shape of her head. To be honest I am feeling very sad at the thought of this because I feel like it is just one more thing on top of everything else. I know helmets are common and I know it is not a big deal but it still just makes me sad. On the other hand, I know Isla will rock that light purple butterfly helmet like only she can!

*Isla has a condition called hemi-facial microsomia. Her face is under developed on one side. I have noticed this from very early on, probably from the hours that I sat and stared at her during my maternity leave! As time has gone by it has begun to be more noticeable to others and we FINALLY received this diagnosis. Her face will either grow at the same rate on each side from this point on or the right side could continue to develop more than the left. Surgery can be done to correct this but not until she is older and at that it will be her choice to do so or not.

*Isla recently had x-rays done which showed and incomplete or fused upper vertebrae. This is our most recent news so I can't clarify much more than that. I will of course update as I find out more.

*So far Goldenhar Syndrome is looking like the closest match to the constellation of defects that Isla shows. She is missing one key component which has to do with her eyes so we will be seeing the eye doctor very soon for sure. She does not have this diagnosis yet, I just thought I would mention it because my instinct tells me that all these pieces go together.

Isla is my rainbow. Her crooked smile is my love. She is a tough and brave baby and I have learned so much from her in these 9 months. She amazes me every day.

Isla's Birth Story

On Wednesday, March 4th, 2009, I was eating my lunch with two co-workers when I suddenly realized I had not yet felt Isla move since the previous night. I immediately dropped whatever food I was surely shoving into my mouth as if I hadn't eaten in months and clutched my basketball belly. I don't believe it, I thought, she is usually so active that I couldn't understand how I had made it this far into the day without feeling a kick. I asked for reassurance from my co-workers that could not be given. I proceeded to eat anything sugary that I could get my hands on that would give my girl a kick-start. Nothing, all afternoon I didn't feel any movement until the evening, 7 pm was always her busiest time so I was extremely relieved that she decided to give me a short but very noticeable acrobatic show at that point. I decided that although I was happy she was still swimming around in there, I would be sure to bring it up to my doctor at my weekly appointment the following morning.

Most weekly appointments were nothing out of the ordinary and I did not think this one would be any different. I mentioned to my doc the previous day's worries and she suggested we start with a non-stress test. Isla did not do so well on her test, she must take after me in this area, I hate tests too! The ultra-sound tech fed me juice, pushed on my belly, she did everything short of reaching in side of me and tickling her but Isla did not move a muscle until minutes within the half-hour mark. They sent me in for more monitoring and informed me that the doctor would like to speak with me after the tests were completed. I remember making a joke (as I always do in completely uncomfortable situations) at which the tech did not find funny in the least and I started to think maybe something serious was about to happen.

Once I was dressed and sitting across from my doctor she began speaking and I rose out of my body. Looking down at myself I saw a girl, terrified, being told that her baby barely passed the test and that they suspect that her placenta is failing because the baby inside her is only weighing in at about 5 lbs at 38 weeks. That girl was told that she was not going to work today as planned but instead she was going to the hospital to be induced. I couldn't believe that the girl below was me. I don't know if this is when I first went in to shock or if it happened much later but I know I felt very numb. I got lost on the way home, I got lost coming home from a place I had been to at least 20 times in the past 38 weeks.

I met my frazzled husband, Nate, at home, packed my bag (which I had completely procrastinated at doing) and ate my last meal, we were off to the hospital. While we sat in disbelief in the registration office I spoke with my family members. In particular my brother who had just witnessed the birth of his beautiful baby girl, Avery, being born via scheduled c-section. I got the news that my sister-in-law, Erin, and baby Avery were both doing well as my brother Seth proclaimed how beautiful his daughter was in a tone that I had never heard on his words. Hearing the sound of those words sent a rush through my body that made the room swirl. I was so happy that he was in that moment and could not believe that I was going to have that same very special, very anticipated moment in my life so soon after.

We settled into our delivery room and met the first in a line of many, many, many nurses. The plan of attack: Insert Cervadil which would help me dilate and efface. This would not do much but possibly cause some cramping and I was told I should sleep through the night, wake up, shower, eat breakfast and then be induced with Pitocin. In a very small percentage of women, Cervadil will actually put a women into labor, but don't worry they assured me, it's a very small percentage. Well, as you read on you will see that being in the very smallest of percentages is kind of our thing.

They inserted the Cervadil at 4pm (I remember because Oprah was coming on) and within the hour I was having contractions, painless at first but that quickly changed. The nurse I will never forget assured me that I was cramping and that "most women" sleep through this part. She didn't think that I was in labor because it was so uncommon, but I knew his was unlike any cramping that I had ever felt before. She made me feel horrible by telling me this and each time she came into the room I would act "normal" and like I was not in pain as to show her I was not being affected by my "cramps". At shift change in walks the second nurse I will never forget. She is wearing an Adidas warm up suit in place of scrubs, she is a loud, friendly, comforting and crazy woman. She looks at my charts and says "Oh no honey, you are in active labor!" THANK GOD! I have never been so relieved to hear what I already knew in all of my life!

That was the beginning of about 10 hours of non-medicated, can't leave the bed, 100% back labor. Miss Isla was sunny-side up causing contractions in my lower back and bottom...a lovely feeling let me tell you. I couldn't get out of bed because they had to monitor me and they couldn't give me anything for the pain because her heart was not handling things well already. So, I laid there and they would occasionally come in to flip me over like a beached whale.

Labor was all quite a blur. My contractions were over-lapping which didn't give me any time to rest. One would peak and before ending another one would already be climbing. I did my breathing and barked orders at my loving husband. "Rub my back! Stop rubbing my back! Turn on the lights! Turn off the lights!" He was great, and gracious and completely there for me throughout the entire labor (except for those 2 hours where he slept on the cot and I labored while watching The Fresh Prince of Bel Air at 3 o'clock in the morning).

When they approached us with the recommendation of a c-section due to Isla's heart not managing the stress of labor it was the easiest decision in the world for me. For starters, the pain would be taken away very soon, by a huge needle inserted into my spine maybe, but beggars can't be choosers. More importantly, my child was in danger. Earlier I agreed to being induced because my doctor explained that whatever was happening to Isla inside my body was exactly that, inside my body. She could be more easily taken care of outside my body at this point. So, with those same words of advice I made my second decision based on my daughter's best interest. I will always regret not having given birth vaginally but ultimately, I would not change a thing. It was not about me and the way I planned for her birth to go at this point, it was about this tiny baby girl inside my belly fighting to be born.

Isla's actual birth was extremely surreal to me. I was rolled into the operating room but not before they almost dropped me when the two halves of my birthing bed came apart in the middle of the hallway. I was rolled in and given the spinal, which compared to 10 hours of labor didn't feel like much more that a mosquito bite. I was numb from the chest down and my arms were straight out on either side of me. I heard the nurses counting off their tools and saw the doctors walking above me, all of whom did not pay all that much attention to the head that was me at the top of the table. All except nurse Adidas, who never failed to tell me that I was doing a good job. Finally after what seemed like an eternity, Nate joined me which helped me tremendously to have courage. They began the procedure and I could feel tugging as by body rocked back and forth. My eyes were spilling tears as I prayed for my most amazing little baby to have a strong heart and to make it out to me alive. As her body was pulled from my body I heard nothing. I looked up at Nate who had a better view than I. He assured me that she was out and that they were cleaning her off and checking her out.

Then a nurse popped her head around the curtain and said "She has a little bit of a cleft lip and a cupped ear".

"No she doesn't, no she doesn't. They told me no." is all I could say.

Nate was handed this baby. I stared at her in disbelief. She had a big portion of her upper lip missing, her nostril was stretched to the side and her ear was folded over. She was tiny and red and woudn't stop poking her tongue out and in. At this point I wish I could describe the feeling I had but I can not. I do not have words for it. I did love her immediately but it was not anything like I had expected. She didn't look like any other baby I had ever seen, she was not placed on my belly just after being born and I wasn't even the first person to hold her. I didn't have much time to think about this because I started to first feel my lungs begin to numb, which they stopped by inclining the bed. Then I began to shake and throw up into a small suction stick (the kind used by dentists!). I asked the nurse if she was serious and then proceeded to puke into the air. Agh yes, just the labor I had envisioned!

I began to panic with a numbness that I can not explain. I was spinning on the inside but calm on the outside. I looked back up at my baby in the arms of her father as he said "She is so beautiful. Look, Beck, she is so beautiful." I watched as a father fell in love with his daughter and was snapped back to reality. She is beautiful. She is my baby. I have felt her tremendously tiny hands sail over the inside of my belly for months and I have felt her gentle feet push against my hand. I have waited for this moment for so long. She is here. She is my daughter.

She was eventually placed in my arms and somehow we were back in the birthing room. She latched on immediately, it was the first and only time that she breastfed with no problems at all. She looked up at me with those eyes and I loved her. That moment was perfect. She was perfect.

Isla Arlene Neylon

Born March 6th, 2009

4:58 am

5 lbs 7 oz