Updates

We brought Sean to the cardiologist and he is still doing beautifully. Thank goodness. All the repairs look good and there is still no leakage. This time Dr. L was able to do a full echo because Sean was nowhere near as sore as he was at 1 week post op. His incision is healing very nicely. My happy little man is only 3.5 months old and already has battle scars. I guess it could be worse. He could look like Frankenstein with a "zipper" up his chest right?



We started the process of changing Early Intervention service coordinators & getting Sean physical and occupational therapy evaluations. When his initial evaluation was completed, Sean was doing everything and 2 week old should be doing & then some. What a 2 week old should be doing is pretty much nothing except eating & pooping. Yup.... we had that covered.

As everyone knows, I've been really worried about Sean's head & neck control. Everyone agrees that it's so strange for Sean to just stop lifting up his head. Especially since he stopped before his surgery. He has started to do it a little bit again, but I'm still very concerned about it. Plus occupational & physical therapies can only be good for him. They won't hurt.

I got in touch with Thursday's Child (agency providing Sean's services) to ask what the procedure was and to get help with the form our service coordinator, Miss. R., had sent me. This led me down a seemingly endless path of red tape. I'm still very new to navigating early intervention and every time someone told me something, it seemed to contradict everything else I had been told. After being given her number, I called Mrs. B at Early Intervention quality control for the city to go over what it was I wanted to do and how I needed to go about doing it. She informed that I needed to get a justification for evaluation from Sean's feeding therapist, complete the form (name & address) for consent to the evals, and any other supporting information I could get. So I got a letter from Sean's pediatrician confirming the diagnosis of hypotonia (low muscle tone) and recommending the evals. I also let Mrs. B know who our new service coordinator would be. She also said that our old/current service coordinator would have to file both the change of service coordinator form and the request for evals. After all the forms & supporting documents were faxed to the service coordinator and then sent off to the city for approval.

Because quality control was involved, Sean's request for evals was approved in less than 6 hours. 6 hours! We were told that it could easily take a month for that kind of request to be approved by the city. I  am left bewildered by all of the circles I have had to go in in order to ensure that Sean received the services that a) he's entitled to & b) that he needs.

I wish I could describe my thoughts with regard to the city red tape. I guess the easiest way to describe it is that some schmuck that works for the city decides something isn't working efficiently. So he changes it without regard for how that change is going to affect ever other facet of the operation. After he realizes that the change is not working the way he planned, he chooses not to change to back & start over, but instead to fix everything else around the 1st mistake. Making for an even bigger clusterfuck. Does that even make any sense?

Yesterday I had plans to go visit my grandparents with the kids. It's been a while since we've seen them for something fun and I knew Meredith would enjoy herself as would we all. I decided to leave right after M got out of school in the hopes that she'd nap in the car. Meredith basically told me to kiss her butt; she wasn't napping. Ok no big deal right? By the time we got to my grandparents' neighborhood both kids were screaming in the car. I pulled into the 1st garage & parked. I got the kids out & headed to their house because I was about to drive right into a wall if I had to listen to the symphony of whining & crying going on behind me.

We had a nice time, but I think it was even more special for Meredith. I think this was the first time she actually realized that she could have more than one "ema". Granted she called my grandmother "mema", but you get the idea. Until now having more than one grandma was pretty foreign to her. My mother doesn't live close so Meredith never sees her. My grandmother isn't right around the corner so again we don't her as often as we probably should and Rob's grandmother lives in Florida so Meredith doesn't see her either. So the fact that I was saying "great grandma" was really strange to her because now she could put another face to the word "grandma".

It's amazing to watch the wheels turn in Meredith's head. It's amazing to think that just a few months ago Meredith really couldn't reason those kind of things. She couldn't understand how it was possible to have more than 1 "ema" or "mema". As she grew more comfortable and remembered that she knew this person, she had quite the silent conversation with her "mema". It was if she was saying "thank you for allowing me to do this at my pace."

Then we went to have lunch & both kids had meltdowns. I also had a meltdown, but I took mine outside where I could call Rob and curse about how both kids hate me and that's why they continue to gang up on me. I just felt bad for the people trying to eat around us. It also didn't help that it was hot as Hades in there. Then I went back & conned my kid into eating food. We went back upstairs to spend some more time before Rob came to meet us. It was a very nice time and Meredith came away with a new found understanding of family.







And here are some random fall pictures because I just don't have the energy to fit them all in somewhere.

Reconciliation

When I lay in bed at the end of the day I often reconcile the events that have taken place. I wrestle with my thoughts and I work through a lot of my problems. I also think about love and happiness. When I reconcile these things I often work through how all of my emotions & actions played together to create a wonderful scene.

For instance after having a rough day and just needing to get out of the house, Rob & I decided to take the kids to the aquarium. It was chilly and windy. Or as Meredith likes to call it "winding". "Mommy, it's winding out", she'll often say. Meredith hadn't napped. Sean was having a hard time staying asleep. Rob & I were at each other for no good reason except that we were to close in proximity to each other. We needed to focus on nothing. We just needed to get out of the house.

And so we went. We were surprised to find that the main tank had been emptied to be cleaned & that new exhibits were being added. Rob & I commented about how we remembered there being more space & exhibits when we were kids going t this aquarium. It was a little surreal though looking at a huge empty tank. I immediately wondered where all the fish were. It's not like the NY Aquarium is known for it's sprawling acreage.

The aquarium was empty. It was so nice not to have to battle crowds of people to look at the fish. Meredith was able to linger for as long as she wanted and just watch. And that meant that I was allowed to linger & let my mind wander. I was able to stop & really smell the fresh salty sea air. I was able to pity the poor animals in the small enclosures. I was able to wrestle with my own impatience and telepathically apologize to my kids for not being as patient as they deserve for me to be.

And then I realized I had not been having any fun with my kids. I haven't really laughed with them in quite some time. I have watched them and I have enjoyed moments with them, but I haven't really had much fun with them. And I made it my business to do so that day. Sean woke up and was just as cute as he could be in his little bear suit. Rob & Meredith watched the walrus swim back & forth. We saw penguins swimming and an otter just relaxing. We saw sharks & tortoises. We saw jellyfish & watched a as a wave crashed down over us.











































I had fun with my family. And that night I thought about that day's events. I thought about why I hadn't been having fun with my family. I thought about the fear I have of becoming one of those parents who never stops to think about why she had kids. I reconciled all of the angst & loneliness I had been feeling. I filed it away while we were at the aquarium and pulled out a new file. That night I re-prioritized my life and my thoughts.

Yesterday we went to the pedi for Sean's 3 month well visit. We discussed our concerns about Sean not lifting his head anymore while on his belly. The dr didn't seem to concerned, but agreed that Sean should be getting physical therapy, if for no other reason other than it will help him not fall behind. Sean is weighing in at 9lbs 12oz and 23.5 inches long. We discussed a lot of things and after all was said & done I walked out feeling much of the same worry I felt going in. Sean is not gaining weight as well as I think he should be. He hasn't grown in length in just about a month and he's still not motivated to lift his head while he's on his belly. He used to. I have pictures of it to prove it. But about a month ago, he just stopped. He decided he didn't need to do it anymore. It's very frustrating. The one positive is that the pedi showed us that his muscle tone was ok and that it wasn't a functional issue. Just a motivational issue.

Last night I worked through it & figured out a plan. I set in motion all of the things I needed to get done in order for Sean to get evaluations for physical therapy & occupational therapy. I worked through all of my feelings of needing my head examined that I was going to add more obligations to my already stretched schedule.

Today was another one of those rough days. Meredith didn't nap (again), Sean was having a rough day with his belly, Rob had/has been working from home for entirely to long.... It seemed as though my whole day was going to come crashing to a halt. I really felt like if my children didn't start cooperating, they were going to go right out the window. And because my husband was in the house, damn it it was his job to help. To do something. I didn't care what, but something. I realized today that by Rob being home, I truly expected that he should be able to be like me. We should be interchangeable. I realize rationally that we're not. The kids just prefer us for different tasks. It sucks, but it is what it is. Just because I realize that we're not interchangeable does not mean that it doesn't bother me that we're not. I told Rob I'd prefer if he didn't work from home anymore. Not because I don't love him or enjoy his company. I do. I find it difficult to not feel frustrated by Rob's inability to help out even though he's here in the house. Yes I know he's working. Yes that's how we pay our bills, but if you're here in the house you should be helping. If you can't help, you shouldn't be here. Now of course I'm a pain in the ass because if he actually did decide not to work from home, I'd be equally annoyed & upset. This will be something that I work through tonight. I will somehow reconcile my feelings & thoughts about this one. I will somehow figure out how to balance this as well.

Well.... again I just needed to get out of the house. And so we did. We went to the playground. We walked there, made new friends and then walked home.

Tonight I will reconcile how it is I am so easily frustrated by my kids' lack of naps and the endless meltdowns that come with that. Why it is I feel such an overwhelming need to have a break from them & things that have to be done for them. I will try to reconcile the seeming volcano I have turned into.

I will remember how much my kids love each other. I will think about how curious the dogs were with Meredith when she was a baby and how until tonight Dutchess really paid Sean no mind. I will think about how happy my kids really are and how it's because of Rob & I that Meredith is well rounded. And it's because of the 3 of us that Sean will be well rounded.

Wordless Wednesday

Worry & Doubt

That's what my days have been filled with the last few days. And I worry about the silliest things. I am so worried that he's not up to par with other 3 month olds. I know that I shouldn't compare him to anyone else because he's Sean, but it's so hard not to wonder.... "should he be doing this yet? Was Meredith doing this or that by now?" I often find myself daydreaming about how much easier my life might be if I didn't know Sean had down syndrome. I worried about a lot of the same things with Meredith as I am now worrying about with Sean. Am I doing enough to make sure he doesn't fall behind on milestones? Am I keeping him occupied enough to not be bored? In fact I still worry about those things with Meredith. Somehow though it's different with Sean. It feels different.

I am painfully aware of the differences between Sean and other kids. I am acutely aware that Sean WILL have delays in some areas. The problem is the unknown. I don't know what I should be worrying about. Should I worry that it seems like Sean's head & neck control aren't where I think they should be? Should I worry that in many ways he acts very much like a newborn? Is it a good indication that there are many things that he is doing that even older children aren't doing yet? I wish there was some standard for how Sean's chromosomes will affect his development. With his heart condition, there was a definitive flow. The disease had a track it would follow. We knew what to expect and really just about when. We knew what was "normal" for that condition. With down syndrome there is a spectrum. A range. How am I suppose to work with a range?

I am finding it increasingly difficult to feel like I'm doing a good job raising my kids. Meredith spends a lot of her time whining & yelling at me for what seems like no good reason. I'm sure she thinks she has a good reason, but I don't. I feel like I'm failing her. Am I doing everything I can to ensure she's well rounded? Am I teaching her enough things often enough? Am I broadening her mind with enough experiences? What can I do to keep her active? Does she watch to much tv? Am I giving her enough attention? Am I putting her off to much to tend to Sean?

I often find myself wondering why Meredith isn't like other kids as well. I know a lot of parents exaggerate their kids' achievements, but I can't help, but wonder why my kid seems to want to throw a tantrum at the drop of a dime. Why my kid seems to be the only one that refuses to eat. She's not a picky eater, she's just not an eater. Why does my kid seem to have such a hard time falling asleep on her own? Why does my kid seem to have such a hard time separating from me for any length of time? What I wouldn't give to not have a major fit outside the bathroom door. How come my kid doesn't seem as adventurous or seem to be as big a risk taker as other kids?

I have also been spending the last few days feeling sorry for myself. The "why mes" have set in. I have challenged myself to think of ways to think positively about what I perceive to be challenges.

When Meredith refuses to eat and I have emptied my fridge of food to put in front of her, at least my fridge is now empty enough to be cleaned.

When Meredith decides to throw her yogurt on the floor, at least the dogs will lick it up and get the natural cultures everyone's system needs. And hey.... didn't my floor NEED to be washed anyway? Now I have an excuse.

When Meredith decides to throw the holy moses of fits in the middle of the store, it's a chance to practice my meditative skills and block the world out.

When Sean is screaming so hard I have to take him outside for a walk, at least I'm getting some exercise.

When Sean poops so much he needs to be changed 3 times in one minute, at least he's getting to wear all the outfits that are just sitting in his drawers waiting to be worn at least once.

When Dutchess & Brewster decide to pee on the floor, again an opportunity to clean the floors that so desperately needed to be cleaned anyway.

The list goes on & on. I try to make sure I see the silver lining, but......

I am so filled with worry & doubt though that I'm having trouble sleeping. Especially tonight. I have spent the last hour laying in my bed wondering what I will do about what I perceive to be Sean's lack of head control. I worry about bills. I worry about my marriage. I worry about time and scheduling. I worry about drs appointments and therapy appointments.

I have been daydreaming while I'm stuck in traffic or at a red light about spending summers with Rob & the kids on a beach somewhere. And then just like that I'm instantly filled with thoughts of Sean's therapies and drs appointments. How would we make it to all of those things if we weren't here and then he'd fall behind? I'm instantly filled with thoughts of Meredith's activities and how she'd miss out. I have forgotten what it feels like to be free from doubt. I have forgotten what it feels like to be free from worry.

I have been MIA from my blog for the last week or so simply because I am in a really dark place because of all this worry & doubt. I'm feeling removed. Withdrawn. I thought that by now I'd be in a better place. I haven't been able to express what I have been feeling because I never felt it before. I am at a loss for what to do next. This loss has carried over into everything. Everyday lately I feel like I'm fighting a constant losing battle and I'm having a really hard time digging out from the funk.

Cardiologist update

We brought Sean to the cardiologist today for his post-op check up. Dr. LaCorte was very excited by how well Sean did with his surgery & how quickly he was healing. He commented that he would have thought is Sean was released today it would've been early.

Sean's oxygen level is 100% and his heart rate was in the 150's. When Dr. LaCorte started Sean's echo, Sean flipped. He wasn't happy to have anything directly on his chest. It wasn't the laid back Sean he knew pre-operatively. There was no fluid in Sean's lungs or on his heart. YAY!! So we can wean Sean off the lasix. The patch looked great & there was no leakage.

He also explained to us that Dr. Bacha used a new technique on Sean's pulmonary valve. Instead of just putting a patch on the valve, he rebuilt parts of his valve to hopefully avoid the necessity of a valve replacement later in life.

I'm so thrilled that Sean continues to do well. He's such a strong little boy. I'm also happy to have this leg of his journey behind us.

Continued thanks to everyone who continues to offer their support to us.

The journey home

Tuesday night was so nice. I got to spend some time with Meredith and we snuggled, watched some TV and then went to bed peacefully. We woke up on Wednesday morning with the promise of a gorgeous day. We got dressed & ready for school & headed over there. I told Meredith that grandma would be picking her up & she didn't seem to mind. It was pretty painless. I'm so proud of her.

I stopped to get some dunkin donuts for the nurses and headed into the city. It was an absolutely frustrating drive in. I hit so much traffic at every turn that it seemed to take forever to get to the city. Then Rob call me while I was on West Street and 30th Street and told me that Sean had gotten most of his tubes out & was eating. Oh my god!! I missed a major milestone. :( He said when I got there I'd be able to hold him. YAY!!! But I was still stuck in traffic. Grrrrrrrrr I did my best to weave through the slow pokes and bad drivers to get to the hospital and when I got there I was greeted with such a sweet face. He had gotten the cpap taken off and was on just the cannula and no chest tubes. He looked so sweet.



I waited until he woke up before I held him, but it was a hard wait. It really didn't take long for him to wake up, but at the time it felt like a lifetime. I have been itching to get my paws on him and kiss him, hug him and just remind him how much his mommy loves him. I wanted to feel him close to really feel how strong his little body is. It was only then that I'd truly believe he was healing so well.

I wanted to thank him for being such a strong fighter and fighting for his mommy. Before he went in for his surgery I asked him to fight for me. I asked him to be strong and know that we were all routing for him. And he did!! He really did.





The rest of our stay at the hospital was an interesting one to say the least. We spent Wednesday morning in the PICU with our wonderful nurse, but we knew we'd be moving downstairs to the step down room. It was bittersweet. Moving down meant that Sean was making progress and was healing. Leaving meant our nursing care wouldn't be one on one and there was no guarantee of a good nurse or a good roommate.

We were told to ask whether Sean could go home on Friday. Friday!? Really? How could that be? We were told we'd be there 7-10 days and the surgeon said to plan for the 10 day mark because a lot of kids with Down Syndrome take a little longer to heal. So that's what we planned for. I had a really hard time wrapping my head around a 5 day hospital stay. It wasn't that I wanted to stay at the hospital, because I didn't. I just wanted to make sure Sean was ready. Wasn't it only just 2 days since he had moderate bleeding from his chest tubes? Geez!

As we packed our things up for the trip downstairs, we thanked the nurses & drs that took care of Sean and then headed down. We were told that downstairs was a better place to be because the rooms were better because they are warmer and the nurses left you alone at night. Yes the room was warmer. That's where the "better" stops. The girl that was Sean's roommate was a 13 year old who was coughing with a force. We immediately asked the nurses if we could be moved because hello..... Sean just had surgery. The nurse assured us that she was not contagious, but if we wanted we could speak to the charge nurse. We decided against it because we didn't want to go around pissing people off already when we might have needed to spend another week (or so we thought) there. When we left for dinner, the nurse told us she'd spoken to the charge nurse for us. And then we headed to Coogan's for dinner.

As we waited for our food I realized we were at a restaurant alone. Alone with no kids. Go us! I need to capture that moment. It's the first time in over 2 years we have had a meal without a child.



We got settled into Sean's new room and we decided that because of the noise level, I'd go home again to spend the evening with Meredith and Rob would stay with Sean. Rob can sleep through most noise. I, on the other hand, wake up with the slightest pin drop. It was a good thing that I went home. The nurses were in every hour to check on Sean.

When I got home Meredith was relaxing with grandma and she immediately came to give me a hug. She gives the best hugs. Nothing warms my heart more of faster than a squeeze from the best little girl I have ever known.

I said hi to everyone else and told Meredith that she'd be going to visit Sean the next day. She was so excited that she'd get to see her daddy & baby brother Sean.  I then settled in to put Meredith to bed. She went down with ease and then I was able to finally relax.

I woke up early and was out of the house by 5:20am to head to the city. It didn't take me long at all to get in & I was grateful. It was a rough night. Meredith woke up twice and Brewster decided my bedroom was his own personal piddle pad. Brewster almost lost his life as I scrubbed the floors at 4am.

When I got to the hospital everyone was sleeping, including "Lungs" next door. And mysteriously there was no coughing. Hmmmmmmm Rob woke up when I got there and we sat and chatted about the night. Sean had a good night.



The nurse practitioner came in to start to wean Sean off the the cannula. We asked her if Sean would be able to go home on Friday. She surprised us and said the doctors were leaning toward letting him go home that day. I didn't what to say or how to react and I asked her if I could give her a hug. I was so excited. She said yes and I hugged her so tight. She was my hero at that very moment. But there was so much to do. So much to prepare. There really wasn't, but I just didn't know what to do. We needed to get organized and pack up. The house wasn't clean.

We'd have to have an echo done and the drs would have to review the night's readings, but it looked good for us to go home. I was in complete shock. Sean would get his RSV vaccine again if we were going home and we'd have to give Sean some medication. I'm sure I didn't hear a word after "going home today".

Two nursing students came in & started to give Sean his sponge bath. His did fine until the nurse wet his head. I knew it wouldn't be pretty when his head got wet. But he was somewhat clean now. And daddy was a funny guy. He was jealous that Sean was getting a sponge bath and he wasn't.



All clean from his bath & getting ready for a nap.





We asked if we should still have Meredith, Renee & Stew visit. The nurse said yes. We'd probably leave at 4, but there a small chance that we wouldn't be leaving. Then it was echo time. We walked to the room where the echo would be done and we laid him down & opened his pjs. After speaking with the picu nurse, we knew that this was the last thing that needed to be done before we went home. I beamed with such pride that my little fighter had proved everyone wrong. He had shown everyone that he wasn't the average kid with down syndrome. He had shown everyone that he shouldn't be judged based on his chromosomes. He should be judged on him and his capabilities.





Renee & Stew brought Meredith to visit. She was so happy to see Sean. She wanted to kiss him, but I just wasn't comfy with that yet. You never know what she could be harboring. It was so nice to see her care so much for Sean. We decided after 2 hours that it was time for Meredith to go home. She left without much fanfare until she got downstairs. Renee told us that this is when the tears started to flow for Meredith. 4 days was just to long for her to have to deal with mommy & daddy not being home. She cried herself to sleep on the way home and cried when she woke up. She was mushy for about 40 minutes after she got home.



Sean needed a nap, but I needed to drink him in some more. I needed to look at my son and just love him. So did his daddy. It was finally a relaxing couple of minutes that we could just breathe. We knew Sean was feeling better and healing beautifully. We knew we'd be going home. We just wanted to live in that moment. And live we did. We were given a glimpse into sheer will of our son. He's a beautiful soul.







Thankfully the heavens were smiling upon us and were letting us go home. We got Sean dressed in his coming home outfit. And as I have said, we wanted him to be surrounded by love on his trip home. His hat was made by his great grandma. His outfit had been purchased because it was soft and snuggly by his parents, his booties were picked out by his big sister to keep his tootsies warm and his blankie was made by my wonderful friend's mom with love. He looked like a doll.











Meredith was home with grandma & grandpa and they walked the dogs. Because she knew that we were coming home with Sean, she refused to go upstairs until we came home. So they waited on the stoop for us. It was so sweet of her. Like I said 4 days was just 1 day to much for her to be apart from us for any length of time. She needed us home and needed us together. I truly believe it would've been worse had I not come home at night to put her to bed while Sean was in the hospital.

I am in awe of Sean's ability to heal. I am eternally grateful for everyone's help. I am soooooo proud of Meredith for being such an amazing little girl.

This leg of our surgical journey is over. Now we can get one with the business of living. We can start to really focus on Sean being a baby and make sure he continues to thrive. We can really begin our role as parents of two HEALTHY children. And now we can start to focus on us a little more.

Being parents of two kids under 2 years old is hard enough on a marriage. Being the parents of 2 kids under 2 when one has special needs is especially difficult. Thankfully I married my soul mate and it won't be hard to refocus some of our energy to one another. I miss my husband. It doesn't matter that he's usually 3 feet from me. We've been dealing with so much that we've been focusing our energy on keeping our kids healthy & well balanced. Now it's our turn.

Sean has been home for 2 days. He is remarkable. He's eating and sleeping well. He's been smiling all over the place and at everything. We do notice some changes. He's a lot more pink. He was pink before, but now he's flushed. Not really. It just seems that way compared to what he was. His voice is stronger. I was a little moved by his voice. He's nursing better.

I'm still afraid of hurting him when I pick him up and I'm really concerned when he cries. I don't know whether it's gas pain or his chest being sore that causing the screaming. He's supposed to get a bath tonight and I'm scared to death of hurting him.

Yesterday was Sean's 3 month birthday. I can't believe he's already 3 months old. I can't believe he's been through so much already. And he got to spend the day at home. Life doesn't get much better.



Monday we goto the cardiologist for his follow up and then on Thursday we goto the pediatrician for his well visit. I'm excited to see how Dr. Donati (Merediths dr in the practice) is with Sean. I'm excited to see the difference in practice with someone who has a lot more experience working with kids with down syndrome.