Itty Bitty Baby Steps

I want to start by saying I'm so grateful that Molly is with us and is healthy. I never forget all that she has been through and how close we were to losing her. I know that things easily could have gone the other way. I try to remember this when I'm frustrated with her lack of sleeping or when she fights me to eat something she doesn't want to eat but it's not always easy when I'm exhausted. I get frustrated when people take things for granted and when they complain because they had to take their kid to the emergency room for a cut. It's not their fault and I'd probably be the same way if I hadn't lived this life. I just want to scream at them to be grateful that they only need stitches on their head and not staples down their chest!

I've been in a funk since we met with the school system. She has always been so good at making us forget that she's not like every other 2 1/2 year old. Sure she doesn't walk or talk but she looks so perfect. I don't know why I'm having such a hard time with all of this. I just want her to be like every other kid her age and I'm sure anyone would feel that way. But the reality is she is not and hopefully some day she will be. If she isn't we will love her just the same. Even if she doesn't catch up I really hope she learns to sleep!!!!!!!!!!!!

I was already feeling "blah" about her developmental delays and we walked into the Early Intervention center yesterday and they said they were going to do her assessment even though it's not due until next month. I told them it wasn't a good idea because Molly was up from 2:45am-5:30 and then had to get up at 7pm to go to EI. They said they would do what they could. Well, she wasn't cooperative at all. They wanted her to stack blocks and she flung them at the lady. Then they wanted her to do a 3 piece puzzle. She did it no problem but then they flipped it upside down and wanted her to do it again and she flung the puzzle pieces at the lady. They scored her based on what she would do and wouldn't score her on what they have seen her do. We had EI today and I told her how I wasn't happy with yesterdays results because I knew she could do more than she did yesterday so we repeated some of the sections. She stacked the blocks just fine. She picked up her snack with the pincer grasp, put a tiny object in a cup and a few other things. The only thing we didn't get to do was speech and we will do that on Tuesday when we meet with the speech therapist. I'm dreading the results of that portion the most. Luckily she loves the speech therapist so she should be cooperative. Here are the results I have so far:

Fine Motor she went from 11 months to 19 months which is a great gain and I'm happy with the progress.

Gross Motor she only went from 9 months to 10 months and that is because she doesn't walk independently.

Self Care is made up of 3 parts but they average 15 months. The three parts are feeding which is 11 months because she doesn't self feed with a spoon and won't bite a piece of food off. It has to be cut up or broken up for her. Toileting is 15 months and Dressing & Hygiene is 19 months.

Social she went from 16 months to 27 months which is the greatest gain. EI said that she never would've thought this was the category she made the most progress in because when they first met her she hated everyone and could cry the entire time they were here. She also said that Molly does things on her own time and when she's ready and if she doesn't want to do it she lets us know. That's funny because I used to hear that all the time when she was in the hospital.

I asked what we need to work on to improve her scores for each section and we have a lot of work to do but I'm confident that she can do it. We are going to be doubling up on her therapies in May and we will both be very busy but it will be worth it to help her hit her milestones and make the progress that she needs to make. Not to mention she is so frickin heavy. I'm going to break my back carrying her around so she really needs to get this whole walking thing under control.

She has been on Melatonin for a week. It has helped her to fall asleep but not to stay asleep. I really think she likes to torture me and see how far she can push me. Once she sees tears in my eyes and flames shooting out of my ears she knows to back off for a bit. We also started giving her all of her meds by mouth. We haven't used her g tube in 2 days. So before bed she is taking her Flintstone Vitamin, 1/2 a baby asprin, Amoxicillan, Levothyroxine (thyroid medicine) and Melatonin all by mouth and it's not a fight at all. So we have 2 days down and 5 months, 28 days to go before the tube can come out :) Of course once the 6 months rolls around we'll probably say "why don't we wait another 6 months just to be sure?".

Despite the scores of the assessment we know the progress that she has made and how hard she works every day to keep going forward and making us so proud. She will always be the most important thing in our lives and together we will get her to where she needs to be...apparently at her pace.

Stay warm!
Kerry

My baby isn't a baby anymore...

Today was the first step in figuring out Molly’s future once she turns 3 in May. We met with the school system so they could get to meet us and Molly and answer any questions we may have. Molly greeted them by screaming and crying. They said that was a good developmental reaction. We were thinking “her heart…get her to stop crying” (half joking).

They couldn’t get into too many specifics because they didn’t know too much about her, just what Early Intervention had told them which wasn’t much. They hadn’t even seen her medical plan, or maybe they had and thought “holy crap this is too long. I’ll just have the parents tell me when I get there”.  We listened to what they had to say and went over our concerns which the most important one being germs. We told them how nervous we were about the germs in the class room and her getting sick. Because of her delays she would be in a very tiny class room, only 5 kids or so. The teacher to student ration would be 1:1 unless another student signed up. We liked this and we didn’t like it. We liked it because of the germ factor. This classroom is for kids that are very medically fragile and complex so they are very careful about germs. Lots of Purell, lots of Lysol wipes, she would even have her own bag of balls for the ball pit. She could have all of her therapies right in the class room if that’s what we chose or if we wanted her to go to a music class or circle time in the integrated classroom she could do that too (which she won’t be…boogies). It’s all according to Molly’s needs and what she’ll tolerate. Because each kid in the class is so different each teaching method would be different for each kid. This really excited us and peaked our interest. Now the part that I wasn’t all that excited about. I had told EI ahead of time that I wanted her to be in a class room with kids that were medically challenged but not so challenged that they wouldn’t motivate Molly to walk and talk. I liked the idea of an integrated classroom because there were “normal, healthy” kids and kids that needed a little extra help. I figured the kids that were developmentally on target would motivate her to walk and talk and meet the milestones that she is struggling with. EI agreed with me. Well, unfortunately Molly needs too much attention and help and that is not an option right now. She would be in a class or 5 kids that also need a lot of help. Mostly kids that will never walk or talk and that’s fine because she will get the help that she needs and who knows, maybe she will help them in some way. I don’t know what way that is but she’s really good at saying “go” and getting her way all the time. Our other option is to sign her up just for therapy to start off with and once we feel comfortable she can start preschool. The next step is to take a tour of the school and in March she will have an assessment so they will know her needs and then we will go from there. She will definitely be starting an outpatient rehab program in May which I’m really excited about. I think she’ll love it and thrive and I think it’s what she needs. So while everything is still up in the air I’m very excited to be planning her future because there was a time that we wouldn’t dare make a plan for the next week and now week are talking about sending her off to school!

Times they are a changin'

I just went back through my pictures from when Molly first came home from the hospital. I was looking for a picture of her bedroom because I wanted to compare what her room looked like then with all of the medical equipment...ventilator, O2 concentrator, feeding pump, etc. Now we all know I take a lot of pictures and I could not find one picture of her vent. I don't know if I just wasn't thinking or if it was something I did subconsciously. The closest one I found was one that my parents had taken before we arrived home.

This past weekend I had to rearrange the furniture in her room because we use a humidifier for her every night. Well, we were using it to block the exit of her bed except the other day she wanted to get out and kicked it over. I needed to figure out a way to put the room so the humidifier could go at the head of her bed. It's all done now and this morning as I was cleaning up the mess she had made in the 10 minutes I was in the shower I was looking around and thinking about how much her room has changed in the 2 years she has been home. The spots that used to hold her medical equipment are now filled with toys, clothes and furniture. The top of her bureau used to be covered in gloves, compressor, water, syringes. It's all gone and now it's just baby wipes, remote controls. Her closet does still have her feeding pump, feeding bags, some misc supplies and two oxygen tanks...just in case! The only medical equipment left out in her room is her O2 monitor.

                                              This is her room today

         The only piece left...that we will never part with!

This Thursday I'm meeting with the public school system about preschool. I'm anxious and excited to see what they have to say and get the ball rolling. I'm excited to say "adios" to Early Intervention. I'm emotional because she is growing up so fast and isn't going to need me as much anymore but I can't wait for her to start her new therapies and make the progress that I know she will make. I'm going into our meeting with an open mind. I'm not completely ruling out preschool. Just putting it on the back burner for now. We have a lot to think about and discuss. It's not as easy as just picking out a day care and signing her up. There's so much to take into consideration. I don't work out of the house so I don't rely on daycare. I do know it would be good for her to associate with other kids but is that more important than her health? We will see what Thursday brings.

Molly was recently sick (and passed it along to me) and has handled it really well. She never had a fever and her O2 was always 99-100. She was never cranky and always played, ate and drank. She was really congested and snotty and still has a little bit of a lingering cough but she did so well. We can't wait for the winter to be over. All of the talk about the flu is really freaking us out. I won't be able to breathe easy until it's over. We have decided to limit her exposure to public places. Absolutely no indoor kid play places..I don't even like them in the summer time, only stores that aren't crowded, no sick people, no people that have been around sick people. We are always so careful but we are taking extra precautions. Call us over protective, crazy, whatever you want but if she gets sick and ends up in the hospital we are the ones that have to sit there every day and watch her struggle...NO THANK YOU!!!!!!!!!!!!!!! We have already been down that path and it's not a path I ever want to travel again.

She is back to her no sleeping, happy self. She is so close to walking. She walks along things all the time and spends the majority of her days standing. Her communication is also getting better. She doesn't talk but she does some signs and lets us know what she wants. She also does all of the hand movements that we taught her for songs like itsy bitsy, Wheels on the Bus and Twinkle Twinkle. Here is a youtube clip of her doing Twinkle Twinkle Little Star.
Twinkle Twinkle

I hope everyone is staying healthy in the New Year. As always, thank you for following and caring about Molly!

2 Years Already!

On this day, 2 years ago, Jay and I entered Children’s Hospital full of excitement for the very first time. Of course we also felt fear, sadness and anxiety. But mostly excitement…I think. We were taking our baby home for the very first time. It had been 8 long, emotional and exhausting months. Those 8 months were originally only supposed to be a few days. We were never prepared to stay for 8 months. I don’t know if we were ever really prepared for any of this new life. But we quickly learned and adjusted. I only have one child (and she’s trying so hard to keep  it  that way) so I don’t know what it’s like to take a new baby home but my sister had a baby a few years before me so I can kind of compare it to my niece’s homecoming and Molly’s was nothing like that. Everyone could visit my niece and hold her and pass her around. We didn’t allow anyone in our house that wasn’t our parents or a nurse. We picked out her home coming outfit but by the time she actually got to come home it didn’t fit. And by the time she did get to come home her outfit was the last thing on my mind.  Usually when preparing to take your baby home they show you how to clean your baby, feed your baby and change your baby. Set you up with a few diapers and maybe a can of formula and send you on your way. Again, that was not the case for us. We started preparing months before. We had to learn how to change out a trach, change the trach dressing, learn how to perform CPR on a trached baby, give 20 plus medications, make sure we could prime her feeding bag and put it on the feeding pump, follow a schedule to wean her from her sedation meds, follow a schedule to wean her from the ventilator, work the ventilator and O2 concentrator. The list goes on and on. Even with all of these responsibilities we were thrilled to do it all just so we could take her home where she belongs.

The day came so fast and we were so excited but scared, petrified even. This was the only life we had known for 8 months. The cardiac ICU staff became like family to us. The nurses replaced some of the friends we had lost. We loved them so much. After all they were the ones that got to make her better, calm her down when she was sad, spent more time with her than we did, taught us all we needed to know and helped us to find the confidence to take care of her the way she needed. They were no longer going to be a part of our everyday life. We didn’t know what we were going to do without them. The day that Molly was getting discharged we walked in to her room full of balloons. There were pink and white balloons everywhere. I had made a huge sign in the days leading up to her discharge that was hung on the front her of room. Everyone was so happy that we were finally getting out. Wait…were they happy for us or happy they wouldn’t see us anymore? J Either way we were leaving. One of our favorite nurses was on the day we were getting discharged. Ravi, the doctor who did everything for us and for Molly was also there to see us off. It was such an emotional day. I tried to choke back the tears as we said good bye but I couldn’t do it. I wanted to take both of them home with us. Who were we going to ask our questions to? We couldn’t just call ORL to come up or call for a chest x-ray or echo if we thought she needed it. We were completely, 100% on our own. Ravi & Jen walked us down to the car. We hugged them both and said our goodbyes.

This is the moment Molly’s life truly began. She was loaded in and we were on our way. I think it was the longest car ride I had ever taken. We finally arrived at home and Molly was warm, probably from being in the car seat for so long. We took her clothes off and cooled her down. Before we knew it we received a call from Jen checking on us. It was so good to hear from her. We were so nervous. That night I slept on the floor in Molly’s room. She required meds every 2 hours. I felt like I didn’t sleep a wink. My parents had brought over an air mattress the next night so I got to sleep on that. Our night nurse didn’t start right away because we wanted a chance to just be a family at home without any medical staff. As time went on things got easier. We settled into a routine pretty quick. We drew up the meds and did all of the trach care. I ended up leaving my job but quickly found a part time job that allowed me to work from home. We limited the visitors and trips out. As we became more comfortable with Molly’s cares we started to venture out. We didn’t go anywhere where there would be a lot of people. No one’s house (germs), no kids places (germs), no restaurants (germs), well, you get the picture. We disinfected (and still do) everything.

Our trips to Children’s became further and further apart. Days turned into months and now here we are. Two years later! Two years later and she is home and doing so amazing! She is so close to walking. She loves music and TV. She loves to color and paint. She loves to go shopping (thank goodness). She loves to be clean and doesn’t like mess (thank goodness). She doesn’t like to sleep  and doesn’t like to be messed with. We don’t know what the future holds for her medically because she does still have some regurgitation on her mitral valve which will most likely require another open heart surgery at some point in her life and her intestines are still malrotated but we no longer let these issues consume our every thought. We allow ourselves to make plans for the future and we have so much hope for her. She deserves the best and we try every day to make it a good one for her. We spend the majority of our time protecting her from germs and we are starting to meet with the school system about preschool. I can’t believe we are already talking about preschool. She is growing up so fast and I can’t wait to see what the future holds for her. We celebrate every milestone as if she were the only one to ever do it. We want her to feel special all the time because she has been through so much and we want her to always know that she is loved and wanted and she didn’t go through everything she did for nothing. We couldn’t be happier to be her parents and we are so happy that we were the two that were picked.

                                               Day Molly was born

On our way home!!

 

                               And this was today. She has come so far!