Tomorrow we will be free!

Well sort of. We will be cast free! Big step!

I am excited to be moving to the next step though I know it will be hard. The doctor has us come back after the first week in the brace because he says the first week is hard. So there's that to look forward to. In addition as the weeks in the cast have gone on Mack's foot has become very sensitive when the cast is off. So I'm sure it will be a difficult transition for a while until he becomes more comfortable.

But we are excited to move to this next step. A step where he gets an hour every day to be just himself. And the learning curving that comes with this new step and learning how you do all things baby with a brace to work around. We will just have to figure it out. 

After he gets his cast off we will have to go back to the doctor to get his vaccinations since he was unable to get them all because of the cast. I'm actually pretty curious to see what he actually weighs without his cast on.

Here's to hoping for a smooth week! 

And maybe even some sleep :)

Tomorrow

Mack's feet before any treatment

If all goes according to plan Mack will get his 5th cast removed tomorrow and they will do a tenotomy and then put him in his final three week cast. This creates an strange feeling for me. This will be done without sedation. Which is good, sedation is dangerous in babies. And for any mother who has watched her child be put under is a very unsettling feeling. I'm happy he does not need to be sedated. However the thought of them doing this without sedation does not feel good either.

 It's awful to watch your child in pain. 

But in the end this is important to his treatment.  So I'll just be glad when it is over with.

Going into his last cast I'm excited to be finishing  this part of his treatment. I've been reflecting back on the amazing progress he has made. It's incredible to me how much they have altered his foot in such a short time. 

Adjusting to his first cast

After the first cast

After the second cast

After the third cast

After the fourth cast

His last few casts have caused more discomfort coming off and his foot is becoming more sensitive to the touch. I hate that he's uncomfortable.

 I can't wait to be done changing diapers around a cast, trying to take pajamas and pants on and off with a leg that can't bend, giving baths with a ziplock bag and trying to position my hands around an awkward cast when comforting my child. 

This kid has had a rough start with a lot of poking and prodding from the beginning.

 Fortunately he's a great little boy who has been pretty laid back through all of it. 

And hopefully one day it will all be worth it when he can be a healthy little boy who can walk and be pain free. Like he was born like everyone else

And until then I'll just focus on enjoying the fact that I have some awesome boys in my life.

Who love each other.

And who love to show each other in beautiful moments.

 

And I'll be thankful to live in a place where I have access to the services to give my boys exactly what they need to be their best selves.

And hope that one day I can look back at all of this and marvel at where my boy has come from.

Mack has arrived

It's hard to believe but Mack finally joined us over 3 weeks ago. Mike and I did our best to plan to make his arrival as smooth as possible. We tried to plan to avoid stressors that arose with Conor and potential stressors we could foresee with having two kids. But as is always the case somebody had other plans for us and Mack made his entrance his own.

After a stressful prep for surgery (my veins are not cooperative and make IVs difficult to start) and an uneventful C-section(thankfully). Mack was born. They worked on Mack for sometime in the operating room but he remained in the room for much longer then Conor had been in the room. So Mike and I sat and discussed how he was crying a lot and Conor hardly cried at all, this must be a good sign. As we talked about all the differences between this time and last and how this must be positive we were suddenly told he was being taken to the NICU and Mike was not allowed to go with him. 

Aren't we naive?

After a couple hours we were allowed to go see him on the way from the recovery room to my room. Unfortunately we were not allowed to hold him but we could see and touch him. It was almost 24 hours before I could hold my baby. 

That was a hard wait to say the least!

Initially we thought he would be out of the NICU before the day ended. 

Again we were naive. 

Fortunately Mack was fine and just needed some extra help getting the fluid out of his chest and then he got off the CPAP and off IV fluids and his sugars were stable. So we thought he would be out of the NICU soon.

Again we were wrong.

Mack's bilirubin levels were going up to quickly so he remained in the NICU and was treated with the blue light. After being on the light his numbers stopped going up so quickly and he was taken off and monitored. After 5 long(this is an understatement) days in the NICU Mack was finally ready to come home! We were so fortunate that I was able to stay in the hospital until Mack was discharged. It would have killed me to leave him there. 

With the NICU stay all our plans went out the window. Our plans to introduce Conor to his brother altered greatly by our limited access to Mack and even more limited ability to bring a small child to the NICU. Our plans to spend some time at home before Mike went to work altered by our elongated hospital stay. 

With the changes of a little brother and the added confusion of not being able to see Mack, Conor had a tough time adjusting. He was absolutely in love with his brother immediately and was excited to tell everyone about them. But all the changes in his routine left Conor out of sorts. Luckily things are slowly getting back to normal and Conor is starting to adjust.

Life with two is tiring but we are adjusting.

Slowly we are creating our new normal.

We've been busy though. Two kids means even more appointments for us. Between Mack's clubfoot and his jaundice we have spent even more time in doctor's offices (I really didn't know this was possible!). In my infinite wisdom I have tried to schedule Mack and Conor's appointments together as much as possible to save trips. While this is convenient, it is stressful to be doing so many appointments in one day. But things are slowing down...slowly

Mack is already on his third cast. We are keeping our fingers crossed that we won't have many more casts but only time will tell. So far the casts have been manageable. It's a nuisance at times and makes me feel a little nervous at times but we are getting used to it. And Mack does not seem bothered by the cast.

At his last casting there was a small wait between the cast coming off and the new cast going on. During that wait I had time to cuddle with Mack. It surprised me initially how different it felt to cuddle him without the cast. This made me feel a little sad. I can't really explain why, Mack cuddles just fine normally. But I guess I felt like I was missing cuddling with Mack in his natural state by having this cast. After all he's had a cast since he was 6 days old and most of those days were spent in a hospital.

But in the end I know this will all be over before I know it and he will be done with his casts. And then I can cuddle him (he gets a free hour when he moves to a brace). 

Life presents challenges. 

But for all the unpredicatability and stressors that may come up we are handling it. And we are so blessed to have these two sweet little boys.

Almost Time for Baby

So in less then 24 hours we will be a family of four. This comes with a whole bunch of emotions. I'm also realizing it's very different then last time. 

I'm realizing it's hard going into having a second baby when the first one was born with special needs. It's probably even harder knowing that the second one does indeed have a birth defect. I find myself wandering what if it's not just a club foot? I wonder how bad his foot will really be? As prepared as I've made myself I am anxious to see what this new journey will be like for us.

A few months ago in e-mailing Conor's neurologist I felt it would be a good idea to mention I was pregnant. I'm not sure what I thought it would help but given that we have no clue what caused Conor's brain injury any chance at information to prevent this is important to me. Of course in my heart I knew there was nothing but still I thought I'd try. In her response she reminded me to enjoy my pregnancy (yeah right!) and not worry too much about what ifs. 

I thought I was doing well not worrying too much. Though I have to say this is no longer the case. Every time I get kicked and it hurts a little I think 'hmm that's probably a good sign he's got good strength'. I've got this whole plan on how to approach breastfeeding this time in case this baby has latching issues like Conor. I'm sure I'll over analyze every milestone he reaches. It's definitely different this time.

I think every parent spends months wondering about their unborn child. What they will look like, what they will be like and will they be healthy. This time this creates a weird thought process for me. Conor was a peanut, super skinny with a head full of hair. Not your normal baby look but I loved it. So I find myself hoping Mack looks similar. Despite always having thoughts baby rolls were cute (Conor's never had a roll a day in his life) I loved his scrawny little legs and I would be so happy if Mack had this too. Except then I think maybe that was the low muscle tone, maybe I really don't want that. 

All and all I'm so ready to have this baby. I can't wait to not be pregnant anymore. I really can't wait to see Conor be a big brother. He's so excited! And I can't wait to meet my second son. But mostly sometimes I think I just need the break from pregnancy :)

A new year will bring a new family member

We are getting close to the arrival of our new little guy. Conor is incredibly excited about the new baby. Every day he asks if Mack's ready to come out and he tries to reach in my mouth to get the baby. Sometimes he uses his toy screwdriver to try and get him out. This is certainly not my favorite activity each day. Though I will admit if it wasn't my mouth being pried open this is a humorous activity. I just hope he's as excited about the actual baby as he is about the idea of the baby. I guess time will tell.

I'm finding this part of pregnancy to be very different then last time. It was at this point in pregnancy with Conor that I actually felt the best I had all pregnancy (weird I know). I was excited to meet him but not ready to have him yet. I was determined to finish up at work before he came and worked until my due date.

This time I'm uncomfortable and soooo over being pregnant. I want to meet him. I want to not be pregnant and I really want to be done work. But at the same time I'm constantly convicted. The reality is I want to be done but I'm not at all ready for him. I still have so much I want to do before he's born (and no energy to do any of it). I also am not ready to be done at work as much as I want to be done. I will again work up until I have him but this time I'm regretting not giving myself a little time off before he comes. 

I think I'm just conflicted in general these days. Some days when I think about everything I will have to deal with between Mack and Conor I think "I got this." Sometimes I feel like I can totally be that supermom and will be able to handle all their appointments and needs and struggles with no problem. Other days I think "oh god this is going to be tough!" 

It's weird going back and forth. Some days those this is going to be tough days can be very discouraging. I get to feeling like it's too much to handle now and it will only get harder. On the "I got this" days though I feel like I can handle anything and do it all. This is a great feeling and I wish I could hold onto it all the time. But I can't. Because the truth is in reality I'm sure I'll really be somewhere in the middle. Somewhere that is completely overwhelmed but yet somehow managing to do what I think is best but never being quite sure how long I'll be able to keep it up, nor how long I need to.

I guess that's just life though and we all seem to muddle through somehow. I just need to make sure I don't let my personal pity parties last too long.

I love this time of year!

It's Christmas Eve! 

I love Christmas. I always have. My parents did a wonderful job making Christmas so full of magic. I often wish I could have the ability that children have to believe in all the magic of Christmas. You never totally get that back, but I think having kids gets me pretty darn close. I remember being little and loving Christmas movies and Christmas music. I hate when the days start getting shorter and it gets dark early. But all that changes when Christmas lights start going up. Once people start putting up their decorations I couldn't be happier that it's dark. I love to see the lights as I'm driving. It makes me nostalgic and feel that magic and wonderment of Christmas in a whole new way.  

It warms my heart that Conor has the same love of Christmas. He loves the lights, the movies, snowmen and particularly Santa. We read Christmas stories at night. He looks for Alf (our Elf of the Shelf) everyday and his smile when he finds him is priceless.

This year is funny. I feel like Christmas snuck up on us. This is probably because of a shorter time this year between Thanksgiving and Christmas and that that we spent a week of that shortened time in DisneyWorld. I love DisneyWorld but 80 degree temperatures make it hard to feel like Christmas. (Though Disney was obviously still magical and amazing!) I feel like I didn't have time this year to enjoy the season as much as I would like and we didn't get to do lots of Christmas stuff. This is a little disappointing to me though I'm sure for Conor it's good enough.

I was thinking that with the holidays being right before my due date it would make time pass before Baby Mack (Mike spilled the beans so I'm embracing it) arrived. Funny though as quickly as Christmas got here this pregnancy seems to be dragging now. Go figure! Oh well he will be here in less then a month and I'm sure life would get more crazy.

In the meantime I will enjoy Christmas. After all Santa should be here shortly!

Merry Christmas!!!

It may not be what I expected but new challenges means new lessons

Boy we've been busy! 

Mike and I decided with things with Conor becoming slightly more settled (we thought) it was time to expand our family. With issues we had with fertility last time we wasted less time going back to the fertility doctor to start treatment. It took longer then I hoped for this time but boy even though fertility treatment is rough (emotionally particularly) it's much easier when following disappointment you can come home and squeeze your little boy. After 3 tries I got pregnant but unfortunately I miscarried shortly after finding out I was pregnant. I was lucky it happened early instead of late but wow what a rough experience. Between hormones and disappointment and the daunting thought of having to do more dreaded fertility treatment when I thought I was done it was a roller coaster I was not prepared for. After struggling I came to the decision that the trip we had been contemplating needed to happen. I needed time to just enjoy my family. So Mike being an amazing husband found a way to make a last minute trip to Disney happen.

Let me tell you Disney World is good for the soul! We had an amazing time in Disney World and spending time with my little family as just us was exactly what I needed to move forward. We tried treatment again after we returned and as luck would have it...

It worked! 

So Conor will be a big brother. He's so excited though I think he was slightly disappointed to find out its a boy. He seems to be coming around to the idea of a brother. As excited as I was to have another baby I certainly was worried what pregnancy would be as with Conor I was so sick. But I've always said Conor has provided me with great perspective. I suspect had this been my first pregnancy I would have struggled with morning sickness. But I think by comparison the typical morning sickness I experienced this time was totally manageable and somewhat a relief to what I experienced before. So thanks for the perspective buddy!

I struggled for a while with this pregnancy. I was never sure if it was the fear from miscarriage or just unrealistic expectations of myself. I felt I wasn't as connected, in love with or excited about this baby as I believe I was with Conor. I tried to remind myself that I can't remember how I actually felt with Conor just how I thought I did and I rationalized to remind myself that once baby #2 comes I will love him in a way I cannot know until he's here.

The world always has a way of putting things in perspective for me though. This baby is rather uncooperative in ultrasounds so after 3 tries at an anatomy scan the doctor informed me that the baby would have a clubbed left foot. I was honestly not expecting to hear anything was wrong. And again I was hit with the thought that had this been my first child I may have been very upset in that doctors office. Instead the doctor told me what that meant and how they treat it (completely treatable). And my response was "that sounds like a pain in the ass but ok". The doctor assured me though that this would be much easier to deal with then the issues we have had with Conor. So I choose to believe the doctor and not worry too much.

Since Conor was having an EEG the following week at Children's Hospital we arranged to meet with the orthopedic specialist for baby #2 to get a treatment plan in place. Yup baby #2 already has his own specialist at Children's.  Conor's EEG was to monitor for potential seizure risks just in case due to the severity of symptoms he was experiencing with his apparent migraine episodes. He was awesome in the hospital and his EEG came back normal. So even though we continue to have difficulty with these episodes I am relieved the EEG was normal and hopeful that a medication switch may reduce the episodes.

Since finding out about baby #2's foot and what that will be like I'm relieved his issues are with his legs instead of his brain this I'm certain. However there are times that I get all nostalgic and think about the little things I will miss. Like easy access to adorable baby feet (though he will have one uncasted foot) and the inability to use footie pjs once he moves into braces. Which means all the adorable pjs I remember Conor in and can't wait to see this baby in will not work :/ Other times I get stressed about managing all the appointments between the two boys. But I remind myself what it was like when Conor first got out of the hospital. I never knew how I could balance it all and I still don't know how I did. But in the moment I just did. So I'm sure in the moment I just will. 

All this information has certainly taught me one thing though. Those concerns I had about whether I loved this baby enough or was connected disappeared immediately that day in the ultrasound room when the doctor told me about his club feet. I no longer worried about how much I loved this baby because my mommy instinct kicked in instantly as I began my journey of how to I help this baby.

I thought this baby would be easier then Conor but as life would see fit I guess I'll just find difficult in a new way. But as long as I keep the lessons in perspective I've been taught along the way we will find a way to balance it all.  We'll just be even more busy!

But busy sometimes makes life fun!