Our new perspective...

We are... hmmm... I think the look on Ian's face describes it best...

We are slowly learning our new roles as parents and doing our very best :) Ian is thriving and he is growing and he is adorable! We LOVE having him home and I LOVE being able to kiss on him whenever I want - although I try not to do it so much while he's sound asleep (it's just so hard to restrain myself sometimes!!!).

We are all sorts of blurry :) It's been a wild ride trying to figure out sleep, eating, more sleeping, etc. Both for Ian and for me and Doug! Ian was pretty regimented on the schedule set by NICU, however, this is not necessarily the best schedule for him. We are thankfully able to adapt this a little and the little adaptations we've made seem to be working. His last doctors appointment showed that he grew almost a whole inch and he gained 10 ounces (they were hoping for 7 at best) so these are all very good signs. Whatever we're doing must be working :)

We are also enjoying more of his awake time as this is becoming more frequent throughout the day now... So much fun to interact with our little guy! We have been doing a few sessions of tummy-time every day to get him used to using his neck muscles and build up his strength. It's working! Our little bug rolled over for the first time already! How cool is that??? I'm not sure exactly, but that seems really early to me. I have to go get that book "What to Expect the First Year" so I know what to...expect LOL!!! I know that these types of resources are going to show average ages and that there may be differences in his stages due to his Downs, but it may help me to understand an average age, etc.

All in all, we are doing well and we are really enjoying all this time we get to spend together as a family! I am so thankful that Doug has the summer off and that he will be able to spend this time with Ian and I (although I'll be heading back to work in just a few short weeks!). What precious bonding time we will have together before our work lives start up again :)

Long overdue update...

So it's been forever since I've created another post... Needless to say things have been a little crazy, both good and bad.

We'll start with "scary week"...

I believe it all started around the week of May 23rd. Ian kept experiencing what they eventually discovered as acid reflux, but the way it manifested itself was truly the scariest thing I've ever experienced. I don't think this post will even do justice to the emotions I felt during this time. Basically what started happening was anytime we would feed him is he would have a sudden drop in his heart rate and he'd stop breathing to the point where he would turn blue. It was so scary!!! Of course the alarms would start going off and nurses would come in to see what was going on. His poor little immature body just didn't know how to handle the reflux and he would basically pause all of his crucial functions until everything was cleared. Sometimes he wouldn't clear himself though and the staff would have to stimulate him (i.e. rubbing him vigorously to "wake" him up etc.). I was also experiencing some pretty hefty post-partum mood swings and emotions so these situations did not help. It also didn't help that because of all these issues I couldn't sleep at night and was constantly worried about whether he was still safe and sound. Which only added to the increased emotional issues since I was also then becoming sleep deprived. I'm sure I was on the verge of losing my mind... This only lasted about a week thank God! He seemed to get over these "episodes" pretty quickly, but they kept occurring about once or twice a day. I felt so lucky that they occurred while he was still there and hooked up to monitors that would alert someone that there were issues - I don't even want to think about what the outcome would have been in this had happened while he was home with us :( That thought was another reason for my inability to sleep. I would fret over whether this WOULD happen once he came home. I was fairly sure that Doug and I would need to sleep in shifts so we could watch him 24 hours to make sure he was still breathing and his heart was still beating. Eventually, these issues all went away... We changed part of his "feeding plan" after an assessment by the feeding specialist and those changes worked! We were also told that he would not be coming home for at least 1 week after an "episode" so each time it occurred, we were able to pretty much determine that he would be coming home at the earliest one week later.

That all changed pretty quickly...

We received a phone call on Friday, June 3rd that Ian would be coming home that weekend!!! We were elated, and a little freaked out. This meant our ride on the "parenthood express" would be officially starting! Finally!!! 25 days after he was born, we were finally able to bring him home on Sunday, June 5th! Oh my goodness... What are we going to do? We have this fragile little baby that barely weighs 5 lbs and we are going to be his full-time caregivers? He used to have round the clock care by trained professionals that knew EXACTLY what they were doing and we didn't really have a clue. Hmmm... This is going to be interesting :) Poor little Ian! (Ian - I apologize in advance for the misguided adventures that you will soon face with your mommy and daddy. We will try our best, but please forgive us when we mess up!)

And the adventure truly begins...

So we brought Ian home and the next few days were all a blur. Very little sleep (sleeping in shifts would have been a terrific idea had either one of us been able to sleep!), and learning a whole new schedule. Thankfully, Ian's feeding schedule was pretty well structured since he was in NICU for so long and had a 3-hour rotation already established. However, these schedules, while I understand their necessity, are not really created based off of the need of the child. Ian's schedule wasn't really tuned to his wake/sleep schedule and we realized fairly quickly that he is awake during part of the times when he would need to be sleeping and then we would have to fight to get him to stay awake while he was eating. We've quickly changed his schedule and we're allowing him to tell us what he needs when... We are know that food is REALLY important to his growth and development so we want to make sure we are giving him enough and at this point his doctor says there is no such thing as over-feeding him, so we're just offering an amount and letting him eat as much as possible... He's been doing very well. At his last doctor's appointment he had gained 10 ounces. They were hoping for an ounce per day and there was a 1 week period of time between these check-ups so he had exceeded their expectations there. Woo hoo!!! He also grew almost a whole inch within that week as well. At this appt he weighed 5 lbs 14 oz and measured 19 1/2 inches long. This appt was just a day past his original due date so it made me wonder if this would have been his original measurements had he been carried to term? Probably not with his IUGR diagnosis, but it's still weird to think that I have a one month old baby on my due date.

More to updates to follow...

Updates and Resources...

It's been a while since I've sent out any updates on my blog... Little Ian is doing really well and he improves everyday with his bottle feedings! As of yesterday, he has been taking every other feeding ALL from his bottle. The alternate feedings he's taking about half from his bottle, but it appears we are getting closer and closer to getting him home! WOO HOO!!! Go Ian!!!!! He's also still gaining and is tipping the scales at a whopping 4 lbs 12 ozs. My little piggy :) The hospital staff have asked us to go ahead and bring in our car seat so we can do a "car seat challenge". This is where they strap him in to make sure that he can maintain his airway, etc. I guess that means we need to get the base strapped into the vehicle so we can make sure this is put in there correctly :) That's very exciting :) On a more somber note, he has failed the hearing test - again. They have tested him twice now and he has failed both screenings... However, these are only screenings. We have heard that most newborns fail these initially due to built up wax/debris that is still in the ear canals from when they were in the womb. Kids with Downs have smaller ear canals so hearing and ear issues can always arise (more prone to infections, etc.), but this would also make "flushing out" the wax/debris a lot harder for their little bodies... This may not show a real permanent issue. It could just mean that his body hasn't gotten rid of all that stuff yet. We will most likely be referred to a specialist so we can undergo better testing that will give us a better understanding of his situation...

We have been provided a lot of resources so far... The NICU staff provided us a fabulous book "Babies with Down Syndrome: A New Parents' Guide" (pictured at right). It's been a fabulous book that has really helped educate us on Ian and his diagnosis... We're still reading through this obviously, but it has been so instrumental :) It's also brought up other items that we never really thought about in our futures... For example, Doug and I will never be grandparents if Ian ends up being our only child. Boys with Downs are usually infertile - in fact there have only been 2 reported cases of boys fathering children according to this book. This isn't really something that I thought would be a big deal - until I read that. I won't ever be a Grandma or a Nana... That was a little depressing to me. I guess I never realized just how much I was looking forward to that aspect of my future. But who knows, maybe we'll have additional children. And that brings me to another piece - I have a higher risk now of having a second child with Downs. Actually a 1-in-100 chance! Ian was a 1-in-455 chance. I don't think my body likes being pregnant anyways after all the issues I had so we probably would not go this route again in the future if we decide to have more children... We would most likely adopt instead.

Another book we were given by Doug's co-workers was "I'm Down with You" (also pictured at right). This has been a fabulous book that has been more inspirational for Doug and I. It has really encouraged us to see Ian's true potential and what he will bring to our family. You can't help but look at all of these amazing kids/young adults and not feel the joy that eminates from each of them! This book shares stories and quotes from their parents along with the authors of this book. These kids seem to have made instant relationships with the people involved with this book... Will that be Ian's future too? Will people instantly see how special he is and how much he means to us? Probably :) I can't help but love on him every time I get near him!!! His little face is just so kissable! I'll probably embarass him horribly as I'm dropping him off at school by kissing him uncontrollably before he starts his day :) He might hate it - but I can't wait!!! I just love my little guy so much! He better be willing to put up with his crazy mom that can't help it :) Hahahaha!!!

An online resource we've connected with is Northwest Down Syndrome Association. They have a fabulous website: www.nwdsa.org. They have all sorts of imformation listed and they have a bunch of information regarding their community involvement and their advocacy projects. I'm impressed! They also have a play group that meets the 2nd Tuesday of each month for kids birth-to-5. They involve the whole family is this play group so the other siblings of kids with Downs are encouraged to come too. Seems like this will be a great help for us in getting to know other families in our situation :) The next group meets on June 14th so you know we'll be there! This organization has sent us a "New Parent Guide" with all sorts of additonal resources and tools. It has some educational information in there that will help us to better understand Ian and his development. We will most likely be making some phone calls in the weeks to come to get started on Early Intervention for him so we can start working on his motor skills, etc. We still want to make sure that we are doing our very best as parents to make sure that he can have the brightest possible future. Developing these motor skills now will help him in his future :)

Now if only he'd come home so we can start working on these things :)

Words to parent by...

A friend of mine shared a quote on their blog/facebook page...

"Everybody is a genius. But if you judge a fish by it's ability to climb a tree, it will live it's whole life believing that it is stupid." - Albert Einstein

I absolutely LOVE this! And I really feel that it is so applicable to my goal in parenting little Ian. I know that he will have his challenges - what person doesn't - but unfortunately society will place certain limitations on him based upon his "disabilities" without knowing the full extent of his abilities. We have yet to find out what his abilities will be ourselves, but I hate the thought of his life being limited in any way... Either by myself or by "outsiders".

Words really can't describe how strongly I feel about my little guy and how much I want to advocate for him already. Is that silly? I don't even know yet if we'll be faced with any obstacles. I guess I'm just assuming they'll be there knowing what I know about life in general. Maybe I'm just being a protective momma :) I also don't want to further disable Ian by enabling him to use his "disability" as an excuse... I want to support him and enable him to feel capable of reaching his full potential, but I do not want him to feel stupid if he can't attain his goals. His dreams may be out of reach... Or he could shock and surprise us all by reaching those dreams :) Who knows what his future may hold? It's fun to dream about his future... And it's fun to think about all the opportunities I will have as a mommy to lift up and cheer on my little guy and help him achieve his very best :) To be able to proudly sit back and say "That's my Ian!" no matter what he is doing :) I can't wait to see what path he will go down and see where life will take him! It's all pretty exciting :)

So shoot for the stars Ian! As your mom, I promise to provide you with the rocket fuel to get you there if you need it :)

Wow it's been a busy week...

Ian is one week old today and it's been quite the adventure already! It's been filled with highs and lows and I'm afraid most of the lows are self-inflicted and mainly caused by hormonal emotional up-heavals :( Those have not been fun to deal with!!!

So far Ian has cleared virtually all issues - he no longer has an IV in (which I'm sure his poor little feet appreciate!) and he has passed all other physical tests looking for any other possible defects (we are SO blessed there!). The only thing we are really waiting on is for him to learn how to really eat from a bottle. He needs to be able to feed himself in order for us to bring him home. I know this is no small thing, but I wish we could just continue his tube feedings from home... I just have to trust that the care he is receiving in NICU is what he needs right now, but it's getting harder and harder to leave without him everyday. I miss my little bug! One of the nurses actually seemed taken back a little that I was crying today when we went to see him... Hello?!?! How long have you been working in NICU? Don't you probably see this on a daily basis? Especially from no-longer-pregnant women that are dealing with hormonal mood swings? Yah, we don't particularly like this daytime nurse very much and didn't really care for her the last time we had to discuss anything with her last time either... I wish we could request a new nurse, but I don't think that would work :( The other nurses we've had have all been fabulous so I guess one out of the many isn't such a bad deal... We just have to know that if we have any real questions/concerns that we should NEVER discuss them with Audrey... Sorry Ian :(

He has been gaining weight finally rather than losing and he has started maintaining his own body temperature! This is one of the criteria he was supposed to meet so this is one more thing off the checklist :) Woo hoo!!! Way to go Ian :)

I'm still trying to pump as much as possible but it becomes awfully frustrating when I pump for a full 20 minutes and all I get is 1-2 tablespoons total - yes, that's both sides! Not exactly the volume I was hoping for... I'll probably only pump as long as he's in NICU since I know this will be helpful for him while he is trying to grow and gain strength, but once he's home with us, I don't foresee this continuing. I just don't have the energy or the mind set for it anymore... It's not enough volume for the effort being put out.

I've been starting some of the research on what Doug and I can do now with Ian to make sure we are facilitating proper development for our little guy. He will have special needs as far as his motor skills are concerned so we'll need to be aware of how best to develop those with him. It will also take him a little longer to pick things up depending on the severity of his challenges. We obviously won't really know how severe these are until he starts to get little older... We'll have to see what happens, but in the meantime, we're going to educate ourselves as much as possible. It's really hard to not be overwhelmed by all this information though. There are so many groups out there... I probably need to find some sort of support group or something that may help us figure out some of this information.

We also have the task of seeking employment opportunities. I'm not sure that I'm going to want to enroll Ian in daycare right now knowing of his special needs... We'll have to see what we will be able to do under the circumstances. Doug has already been told that he does not have guaranteed position for next year, and even if he does, things will be cut so he's looking at a definite pay cut due to budgeting... I still have a position to go back to, but I'm not sure that I really want to. My boss has said that I'm able to bring my child with me to work, but seriously, how feasible will that really be? And how much of a distraction would that create? Probably a pretty huge one I'm assuming... I think I need to find something elsewhere, and it's a little scary to take that leap of faith. Worse case scenario, I'll find something that is the opposite of Doug's schedule so at least one of us can always be with him. We'll have to see what happens but I know God will provide... So much easier said than done...

All in all though, things are going well! I am recovering from my cesarean and feeling less and less pain everyday. I keep praying that Ian will "click" on bottle feeding and that he will be able to be at home with us soon. We still have a few things we need to do around the house to make sure we are entirely ready for him, but some of that can happen over time. We certainly do not need to have a perfect house before he gets here... He won't be getting into anything anytime soon :)

A letter to Ian...

My little Bug,
Everytime I see your picture on my phone I always say this lovingly out loud: "My little Bug". I miss you horribly and wish you were here with us at home already. I know we both need this time to recover though... You need this time to get well enough to come home, and I need to take this opportunity to recover from the surgery that brought you into this world. I also have to keep reminding myself that you won't remember this separation we had to go through during these first few weeks of your life. It's just me and your Daddy that have to suffer through your absense...

I keep daydreaming about what life will be like when you do come home with us... It's probably more idealic than reality, but I hope it's at least a good balance of both. I imagine that you will thrive with us and that we will do the very best job we can as parents to make sure that your future is as bright as possible. We've already began researching different resources that will help us ensure that you have as many opportunities as possible. We will certianly make sure that you can always do whatever it is you want to do... I don't want you to ever feel that you are limited in your dreams. No matter if someone has a disability or not, everything you gain in life takes hard work. It will take hard work on all of our parts to create your positive future and I promise you that your Daddy and I are up for the challenge. We wanted you and we worked hard for you to be here. We're not stopping now!!! You mean so much to us and we cannot wait to have you home so we can start living our lives together. We will try and teach you as much as we can and I'm sure you will teach us a thing or two too! Even when we picked your name, we knew you were going to be special and you've already lived up to that expectation! Your name is the Scottish version of "John" which means "gift from God". You are truly our gift :) We treasure you and adore you. I hope you can stand being loved so much by so many!!!

We both love you so much!!!
Our little Ian... My little Bug :)

Updates on Ian...

I know it's been a while since I've posted any updates about my little man...

He has still been losing weight - which is standard with ALL newborns regardless of whether they are pre-term, full-term, or post-term. It's just scary to see him lose weight when he already started out so tiny :( He currently weighs 3lbs 14oz.

He has been having some other improvements though! He has started nippling and can go for a period of time feeding from a bottle... This is one of the criteria he must meet in order to be able to come home. He must be able to feed from a bottle and no longer need to be tube fed. Once he's only been tube-fed twice in one day and bottle fed the rest of his feedings, that means we're in the home stretch! (Come on Ian, you can do it!)

We have been able to spend a lot more time with him lately and do a lot more of the "on-hands" care with him. This has been so amazing for all of us. We get to see him all wide awake and alert and then I get to have "Kangaroo Care" with him afterwards. This is where I get to have skin-to-skin time with him and we get to snuggle together for about 2+ hours. I LOVE IT!!! It's so hard not to fall asleep with him in my arms :) It's a good thing he's so little and it doesn't take much to hold onto him :)

The other criteria he must meet is that he has to be able to maintain his body temperature in an open crib. This will probably only happen once he starts to gain some weight back. He's so skinny and doesn't have a lot of the "padding" that babies normally have at birth. They have started increasing the amount they feed him each time and he's digesting everything really well so far. He doesn't like the formula very much (I don't blame him!) and I've been pumping like crazy to try and provide him with breast milk as much as possible. It's frustrating to me that my milk hasn't really come in yet so any amount I get is minimal at best :( I know this is such a valuable source for Ian and will benefit him in ways formula never will. I wish that I could do more and it creates this helpless feeling for me... I can't make my body produce more just by wishing for it...

Today we get to give him a bath :) That should be a fun adventure for all of us! Hopefully none of us get thoroughly peed on LOL!!!

And so it begins...

This adventure... This journey that I have been desperately trying to start for years... Has finally begun - a little sooner than we had thought...

Ian Royce Gillaspie MacDonald was welcomed into this world via c-section on May 12th 2011 at 10:40am. He weighed 4 lbs 6 oz and was 17 3/4 inches long. His original due date was June 13th so this was obviously much sooner than we had originally anticipated.

But perhaps I should start at the beginning...

We had fertility issues and we had tried a bunch of natural methods for years trying to conceive a child on our own. The bottom line is I have Polycystic Ovary Syndrome (PCOS) and natural conception methods would have been near impossible. Any natural methods we tried were unsuccessful so we turned to drug treatments as our first option. We started on Chlomid in February 2010. I had very little side effects on this drug and they steadily increased my dose each month once it was determined that I still was not ovulating. We finally conceived our first child in April. Unfortunately, we lost this first one in May and we were devastated. After trying for so long to conceive on our own and finally receiving the hope that this simple drug intervention could work for us, we were elated to find out we were pregnant. Only to have those hopes destroyed in such a brief period of time... It took longer for us to recover emotionally than it did for my body to recover from this loss. I wanted to jump back on the horse though. I was hoping that the next one would be just as simple! And it was... ish...

We conceived Ian in September and we were again so excited. We tried our hardest to withhold our excitement as much as possible though, not knowing if this one would stick or not. Well he stuck around so he soon became nicknamed "Sticky-Bun"!!!

The months flew by as we started to have hopes and dreams of our future Sticky-Bun. Who would they end up being in life? What will they do? Will they be the kind of person that inspires others? Would they be happy and fulfilled in their lives no matter what happens?

Throughout the pregnancy, I had been diagnosed with multiple different issues... Thankfully, I was being really heavily monitored by my OBGyn so these issues were caught very early on and were handled flawlessly. The overall issues became low acting thyroid, hypertension, and gestational diabetes. These issues meant obvious drastic lifestyle changes for me and I dealt with them as they came at me... Most of these were fairly well maintained with medications - the gestational diabetes being more of a nuisance with the constant finger pokes and insulin injections. But it was all manageable. Thank goodness for alarm settings on cell phones! I had 9 different alarms that would go off telling me that I needed to make sure I was eating snacks at the right times, taking my blood sugar tests at the right times, and taking my medications at the right times. It was all very regimented and regulated... It was also really annoying. I had alarms going about once every couple hours (literally set for 8:30am, 10am, 12:30pm, 2:30pm, 3:30pm, 5:30pm, 7:30pm, 8:30pm, and 10pm). This was on top of the dietary restrictions I was under as gestational diabetic, etc. The benefit of all this management was that I gained very little weight. I literally only gained about 5-7 lbs throughout the whole pregnancy.

The months continued to fly by and in January we had a simple test run... This test is known as a "quad screening". It's a standard test that most practitioners run for pregnant women. It's a maternal blood screening that compares a number of different factors (age, ethnicity, etc.) with other blood screenings in order to determine the mother's risk of possible abnormalities. This is not a very good test and can send out a lot of "false positives". As my doctor explained it, it's like driving a car... If you drive the car on I-5 then you have a certain risk of having an accident on I-5. If you drive I-5 everyday to get to and from work, your risk of having an accident is increased (aka "false positive") but that doesn't necessarily mean that you will ever be involved in an accident on I-5 during your entire lifetime. Same with this screening. It was determined that we had an increased chance of having a baby with Down's Syndrome when my screening was conducted. At the time, before I fully understood the screening and the amount of "false positives" that it sends out, it really freaked me out... I received amazing advice and support from friends and family - gotta love FaceBook! In the end my doctor told me that I could do an amniocentesis to determine for sure if my child had Downs or not. There are many risks associated with conducting the amniocentesis. You are inserting a needle into the amniotic sack in order to extract some of the amniotic fluid to test. Miscarriages after this procedure are fairly common (on average about 1 out of 200 performed). The possibility of another miscarriage was a pretty tough pill to swallow just to determine if this baby had Downs or not... We decided not to chance it...

Throughout this whole pregnancy, I have really felt like this little one was special. Our first child had to leave us in order for Ian to be with us. I truly feel that Ian is here for a purpose! I always believe that there are no accidents and everything has happened for a reason. Ian is NOT an accident and he is HERE for a reason!!!

Ian has Down's Syndrome. I'm not sure if I had already mentally prepared for this ever since the screening results, but in all honesty, it really didn't bother me to hear this news while in recovery. Even now, I still don't feel that this is devastating news... My biggest concern is that he is healthy and strong and that he will able to go home with us soon!

So far, Ian is doing fairly well under his circumstances... The NICU staff have been amazing and are always available for any of our questions. They have been so great about providing us some resources and educating us on his conditions. Apparently heart defects can go hand-in-hand with Downs. Ian had an ultrasound and a cardiologist said his heart looked good - no apparent issues with any of the chambers and he has always had a good strong heartbeat. They have not heard any murmurs either :) He's been increasing his formula at each feeding and he has started digesting his food well. His system is so young that it was not necessarily ready for all of this yet... He was planning on still being in my tummy with the umbilical cord providing his nutrition for him.

So now your journey begins my little Ian... You will have some struggles but your Mommy and Daddy will ALWAYS be here for you! Guiding your way and cheering you on at every step!!! You already mean so much to both of us and we can't wait to be a part of your life :)