Turning 4!

It's crazy to think but in a few days this sweet little boy will be 4. 

It has been a crazy journey. Fun and exciting mixed with scary and emotional at times. But I'm so proud and in love with the big kid he's turned into.

It's been one heck of a year. Way back when Conor first saw 8 zillion specialists I was told that in the next year we would have a good idea of how significantly his brain damage would limit him. (This is of course a scary thing to wait for). Conor was almost two at the time. In the year that followed Conor made amazing progress. He grew and learned and met tons of milestones (sometimes these milestones were only ones I counted but they were progress none the less). By the time Conor turned 3 he no longer qualified for services he was doing most things on age level and was doing great. I was nervous about losing services but I felt relief. In the year that had passed I felt good about his future. I felt like we had this under control and there would be little affect.

This past year caught me by surprise. 

We didn't have therapists anymore and this was hard for me. I found a lot of comfort in knowing that when I wasn't sure about a problem we encountered with Conor I could talk with the therapist about it at the next appointment. I didn't have that anymore. 

With Conor growing older we put him in some more activities like sports. And I watched him struggle. He would get frustrated and melt down and first the first time in his little life I watched him really giving up on himself. That's when I realized my feelings of being "past" this were wrong. I realized we will need to be working extra hard with him his whole life. Maybe it was the pregnancy hormones but that was a tough pill to swallow.

But we put him back in therapy and he started to become more confident again (although slowly). And I started to see my happy care free boy return to normal.

Then he became a big brother!

Something he's been wanting for a long time.

And while the transition was rough. He adjusted and has been an amazing big brother.

I realize now that things will never be "normal" and we will have to support Conor as best we can. But I'm excited about this boys future and I'm so blessed to be a part of his life.

Happy Birthday Buddy!

Boots and Bars

As Mack finished up his casting we decided to get his pictures done with his cast. This is part of his life. We want to remember what he's been through. This will help us appreciate it when he can walk. (I think my feelings about him walking may be very different then with Conor).

It was hard to get this picture of Mack smiling. He was a very serious baby in that cast.

So we ditched the cast and moved onto new challenges. Boots and Bars. The doctor had us come back after a week in the brace. In his words "to make sure you haven't thrown these things out the window." To be honest its a good thing he did. 

It seems to make good sense. Why would I not make him wear the brace after going through all the casting? Plus lets be honest this will help him walk pain free one day. Don't moms make sacrifices for their babies? I knew it would be hard but I thought there was no way I wouldn't make him wear those boots.

But I'll admit. I made it 6 hours and then I desperately wanted to take them off. I had to remind myself a million times this will help him walk. That this is what's best for him. That later that evening he will get to be out of those things for an hour.

See the thing is I would never toss them out a window. BUT I could see how easy it would have been to take them off more then necessary to give him a break. I could have easily rationalized in my head..."Oh I'll just take them off for a little while" "Oh I can work him in gradually"...and that rationalization would have easily ended up with improper wear.

So instead when all my other self-encouragement failed I reminded myself we have to go to the doctors in a week and I don't want to get lectured.

And so despite all my desires I left them on. But let me tell you it was hard the first couple days! When your baby is crying out and cannot be comforted and you know exactly what will make him feel better. Its hard to not do what will make him feel better.

Now things are easier and he's happy even in his boots. Much happier then he ever was in his cast.

And for an hour every night we get to play like every other baby.

And he loves it!

The brace has gotten easier. And we've adjusted. There's still surprises every now and then that I wasn't expecting to be difficult but we are dealing. And despite all attempts to soften the blow he still manages to hurt me with that brace. 

As the weather has gotten warmer and as Mack is getting older he's out of his carseat more and people can see his brace. I see people look at him sometimes (as all people do when they have a baby) and inevitably their gazes end at his feet and their expression changes. Its hard sometimes to see this happen. I don't blame them I would probably do the same. Its a natural reaction I think. But it  stings a little. People also come up and ask more now. This doesn't bother me near as much and I just explain. But its not always possible for people to come and ask.

The other day I was driving and my thoughts went to Mack. I was relieved. We are almost a month in now. Which means just over two months. And then every day he will look like every other baby and just wear those things at night. And very possibly will never have to deal with this again. And I am so glad that that's all this is.

Every night though  I look forward to that hour without the boots. And when that hour is over I have to put those boots back on whether he likes it or not...most times its a bit of a fight. And its a little sad knowing I won't get to see those feet again until the following evening.

I recently showed someone Mack's picture and they asked about his foot. I explained it. And the person asked me how this happens with all Conor's stuff too.

Without thinking I responded very automatically with

"God just likes to challenge me"

It seems like a good enough explanation.

I think I'll go with it.

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.