Bonding

I will probably be judged in a weird way for what I am about to write but I don't really care. These are my real, raw thoughts and I know that many other parents of special needs children feel or have felt the same way I do. These things are not often said aloud because who on Earth would think these things? I do and you may, too.

The moment you find out you are expecting a baby you starting planning. From planning the nursery, to the clothing, you even begin planning your child's life to some extent. For many parents, myself included in this crazy little club, all of your plans go out the window the moment things go wrong. Your world has turned upside down and now the happiest day of your life has suddenly become your worst nightmare.

I have said before that the NICU experience is the hardest thing that a new mother has to face. Her precious baby being taken away just minutes after birth. It is hard. I keep saying that but I can't describe it any other way that you will understand unless you've been there. I have an app on my phone that has a forum for the parents of preemie babies. I was so shocked at multiple posts I've seen on there. One in particular really made me upset. The lady posted something about how she had a friend whose baby had to be in the NICU for 72 hours because the baby had jaundice. The lady continued to say that she told the mother to stop complaining about her NICU stay because "it was only jaundice and she was only in there for a few days." Seriously?! Now I know there are worse cases because I've been there, done that. But that woman knows how hard it is to have a baby in the NICU no matter what it's for or how long. I was so upset and I felt really bad for her friend that she was talking about. Anyway, my point about this story is that the NICU is a hard to place to live no matter how long.

And now to the real point of this post. Bonding. Since Noah had to have a breathing tube when he was first born, I didn't even get to hold him until he was 3 days old. 3 days. If he were a healthy baby we would have long since been home, changing diapers, breast feeding, staying up rocking him to sleep. 3 days. That is a lot of time for a Mommy to be without her baby. I will be really honest now and say that I did not have a connection with him. Yes, I knew that I loved him. Yes, I was sad and cried the first time I saw his tiny little body covered in tubes and wires. But I felt different. Maybe subconsciously my body wasn't ready to bond with him just in case something were to happen. I know this sounds awful. It is even harder for me to type these words. But this is how I felt. Now that I have had time to process everything that happened when Noah was born, I feel pretty confident making these statements. I know I am a good mother. I would do anything for my children. But I feel like, at that time, if I had felt the emotions towards Noah that I do now, I would not have made it through. I had too many decisions to make, too many things to take care of, too many things to learn. If my brain had allowed my heart to feel everything that I "should have" I probably would have had some sort of nervous breakdown and ended up in a psych hospital.

It has been a long process learning how to bond with my child. I can't do normal things like snuggle up on the couch and watch movies or take him to the play ground. Noah is different. Even though he is almost a year old, he is still very much developmentally like a young infant. We do a lot of singing and talking and tickling. That is what makes him happy. I also like to do a lot of his care when I can. Most of the time I have wonderful nurses here who do everything from changing his diapers to giving him his nightly bath. You could see where things could get a little fuzzy knowing who does what for him. When I don't have a nurse or I have a new nurse who hasn't worked here before, I enjoy spending that time with Noah doing normal almost normal things with him. I had a new night nurse last week say, "You take such good care of your baby. Sometimes when I go to work I don't even see a parent for my whole 12 hour shift." I told her that he's still my baby and I would be doing things for him, like giving him a bath and changing his diapers, even if he were healthy. Just because Noah requires a little extra work doesn't mean that I don't have to do it.

I really hope and pray that I do not become one of those lazy parents that relies on nurses to take care of their child. I can see where, after years and years, that this would become very exhausting. Heck, I'm exhausted now! But I don't want Noah to miss out on things and I definitely don't want him to feel like he isn't loved just because he has special needs. He is a smart baby. He knows his name and he loves to watch the show "Franklin." He knows when I'm not around and it would break my heart if he ever felt, even for a second, that I didn't want to take care of him. When we get to Heaven and I finally get to hear his beautiful voice, I want his first words to be , "I love you, Mommy."

Roller Coaster Ride

It has been a cray cray couple of days around these parts!!! Let me fill you in...

So Monday I got a call from Noah's pediatrician's nurse saying that Dr.Cheng had written a letter for our insurance saying not to cut our nursing hours. I was so excited! Then a few hours later, Dr. Cheng called me (this is why I love him because he calls me himself all the time which is awesome for a doctor to do) and said that he had just gotten off the phone with the doctor from the insurance company and they will not be cutting our hours!!! I am so grateful to Dr. Cheng for always helping us out with referrals, insurance stuff, anything that we need to make sure Noah gets the best care and equipment. He is awesome and I hope we never have to find another doctor.

Also on Monday, I got a call from Noah's neurologists office saying that they just got the authorization back from the insurance for his genetic testing and we owe... $0!!! What a blessing! I thought it would be at least a couple hundred dollars out-of-pocket. I told the nurse we would be there the next day to get the lab orders and get his blood taken

Tuesday rolls around and Nathan called in sick to work. He had been fighting a major cold over the weekend (sorry for thinking it was just allergies, babe) and he really needed a day off to rest. He comes in the room and tell me that Noah is getting sick. WHAT??!! He had a fever of 99.6. Then a few minutes later he comes in and says that Noah needed to be put on oxygen. Great. It was a little too early to call the trach clinic nurse so we started getting things ready to pack up and head o the hospital. At 8 I called and left a voice mail for the trach nurse but we decided to just go ahead and start on our way to the hospital.

We got to the ER and Noah's temperature was 101.1 so they gave him some Motrin and ordered a few tests and a chest x-ray. X-ray looked fine, which is good news because pneumonia is a leading cause of death for PMD kids, and tests for flu, RSV, and a few others things all came back negative. The ER doctor basically wanted to write us a prescription for a random antibiotic and kick us out the door. After talking with Noah's nurse and Nathan we decided the best thing for Noah would be to stay overnight for observation. The night time would tell us if he was going to be okay to manage at home or if he was getting sicker and would need more interventions. I didn't want to leave the hospital and end up right back there a few days later with an even sicker baby. At what point will he be considered "sick enough" that they will want to help us?

They admitted him and we waited around forever to be taken up to the room. The admitting doctor came and saw us and she was so nice. She made me feel like I had a valid reason for wanting to stay and didn't make me feel stupid for making suggestions or asking questions like the ER doctor did. Anyway, we finally got up to the room and got everything settled. The team of admitting doctors all came in and, once again, were so nice and made me feel even better about my decision to have Noah observed overnight. Once Noah was settled and finally sleeping the nurse said, "Now what about you, Mom? Have you eaten today?" I told her no, I actually hadn't eaten since before we left the house at 9am and it was now almost 3pm. She told me she would be close to the room doing her charting and would keep an eye on Noah while I ran down to the cafeteria. We started to get settled in for the night and right when it got to my bed time, Noah decided to wake up from his nap. He did pretty well over night and actually slept most of the time when people weren't coming in to bug us.

In the morning the doctors came in to do rounds and they were very nice, again. I told them I felt comfortable taking him home even though he still needed a little bit of oxygen. One of the doctors said, "We are on the fine line between encouraging you to go home and be comfortable but at the same time, we don't want you to feel abandoned when you have a child in a complex care situation." That was like music to my ears. As a mother, you always worry about the decisions you make for your children. It becomes even more stressful when you are making choices everyday about their health and safety. His comment made me feel like they genuinely cared about us and our needs instead of just trying to get the quickest turn over and get us out the door. I told the doctors that I had already called our nursing agency and our nurse was going to meet us at home and we also had night time coverage so we would be taken care of. And... before we left, Noah  got his blood drawn for the genetic test. Yay!

Noah has been doing really well since we came home on Wednesday. He's been off oxygen during the day and only on a very little bit during the night. He is still super duper fussy and started up with another  fever this afternoon. His top two teeth are also super close to popping through so needless to say he has not been a very happy camper these past few days. Hopefully we are near the end of this little virus and he will be back to his regular, smiling self in no time. Also hoping his results come back quickly!

Unrealistic Expectations

Insurance companies have unrealistic expectations when it comes to caring for a disabled child, especially one with the added bonus of a trach. Last week I was informed that insurance wants to drop our nursing hours from 168, which is 24/7 care, down to a shocking 98 hours per week. That's only 14 hours per day! I would obviously have to use those hours for night time care since it's physically impossible to stay up every night with Noah and then turn around and take care of Oliver during the day. When the clinical manager from the nursing company told me this I immediately called the insurance company to file an appeal. They called me back the next day and said that since I didn't get an actual denial of hours I can't file an appeal myself. The nursing company has to call and talk to the doctor that decided Noah's case and find out why they cut our hours. So that was done last week and now we wait...

Here are a few of my reasons why this is so unrealistic:

1. I cannot travel alone with Noah. Or at least, I shouldn't. I have before and if I really, really had to make it work then I could but it's not the safest or most practical way to get anywhere. I have to make sure that I am able to pull over quickly if I need to jump in the back seat to suction. Noah is not the best traveler so he usually throws a fit the whole time. Think of a dog that only gets in the car to go to the vet... Noah is the same way since we only really go to the doctor with him. I wouldn't be able to grocery shop, run errands, anything during the day. Not only that, but we only have one car which Nathan takes to work. Having a nurse here is good in case of emergency because we could just take their car to get to the doctor if we needed to.

2. I have a two-year-old. We would have to stay in the house way more than we already do if I didn't have a nurse here with Noah. Like I mentioned before, he doesn't travel well even just out onto the porch. Oliver and I would go even more crazy than we already are if we had to stay inside all day, every day. I am so mad at the nurse case manager from our insurance that called me last week. I was explaining to her my situation about having Oliver, too and she said, "Well having nurses isn't just for your convenience since you have another child." Um, excuse me? What else are they here for then? I know how to do everything that these nurses do so yes, they are here for my convenience so I can still have a life! It took every last ounce of my composure to not scream at this woman who has probably never had to take care of a disabled child in her life. I was beyond livid.

3. He has a major diagnosis now. Before when his diagnosis was merely a vocal cord thing I could understand them possibly wanting to cut our hours. Maybe he would grow out of it and start getting on track developmentally, who knew? But now that we have this big, huge, life-changing PMD diagnosis, I just don't understand why they would take away hours. Yes, he is stable but PMD is so rare and there are so many side complications that come with this disease. He is going to need a lifetime of care and support to make sure he doesn't get sick (pneumonia is a leading cause of death for PMD patients) and to make sure he is comfortable.

I guess those are my "Top 3" since I'm having a brain fart right now and can't think to add anything else. I hope y'all get my point though. I don't want to come across as whining about how hard my life is either. Honestly, it is hard but I'm living it every day so it has gotten "normal." I just wanted to point out how crazy these insurance people are when they think they can just cut our hours so drastically.

I am not the best about asking for help. It takes a lot out of me. But when it comes to Noah I know I need it. I wish with all of my being that I was able to take care of him by myself all the time. I want to be his Mommy. I want to take care of my baby. I am not at all saying that I don't want to take care of my son or that I don't know how. But physically, mentally, and emotionally, I am tired. It's only going to get harder as he gets older. He will have more appointments, more specialists, more equipment. I cannot do it by myself. I know that. I need help and I am just praying that whoever that person is that decides our case will have a heart and realize that.

It's Always A Fight

Oliver has always been a wonderful sleeper, even as an infant. We have a nightly routine of taking a bath, brushing teething, saying good night to everyone, getting into bed, singing some songs or telling a few stories, then I close the door and don't hear a peep until around 8am. He has always slept in a pitch dark room with only his sound machine on. Easy kid, right? Not anymore...

Oh. My. Gosh. You would think he was being tortured the way he screams and yells at night when we try to put him to bed. He says he is scared so we bought him a nightlight and we also turn on the little projector that is part of his sound machine. His room is anything but dark. In the last month he has also learned how to open the bed room doors even with a "child proof" handle cover on it. This has been so frustrating. I guess it wouldn't be so bad if he had always been this way. You kind of expect that an infant or baby won't sleep through the night or will be difficult to put to sleep but since Oliver has always been so easy it's just like why now?! Ugh, I guess it is just his age. Testing limits and learning what is appropriate. I get that in theory but I don't like actually doing it. 

Anyway, this is just my rant for today. Feeling a little on edge due to my not-so-nice conversation with the insurance company earlier. That deserves its own post though so more on that later.

Photo Friday

I am the luckiest Mommy in the world to have such beautiful babies!

Dealing With Sadness

I have been struggling with depression since Noah was born. The NICU experience feels like a lifetime ago and it is something that I can't describe. Your whole life gets put on hold and the sadness and helplessness that you feel for your newborn baby is almost unbearable. Fast forward to now and we have this new diagnosis which has once again rocked our world. Before, I had hope that maybe Noah just needed a little bit of time to get stronger and work with his therapists. I even had visions of him running around and playing with Oliver. Learning about Noah's PMD has brought me into a more realistic world. A world where he will probably never walk and most likely won't ever talk. A world where I will be a caregiver for the rest of his life. 

Noah is also a little more complicated with his trach. Having a trach kid is isolating in itself. During the cold and flu season we are sequestered away and only venture out for doctors appointments... and even then he still gets sick. It is exhausting being on the phone for hours every week talking to person after person that has no idea what they're doing. Dealing with insurance is something I absolutely despise. Right now, as a matter of fact, insurance is trying to drop our nursing hours to only give us 14 hours per day. Crazy! I would obviously have to use those for night nursing so I would be home alone with a trach kid and a two-year-old all week long. I just don't even want to think about that. 

Anyway, back to the part about isolation... I have only had one friend come and visit me since Noah was born. I know I am a young mom but my "friends" still came around and at least met Oliver when he was born. I'm not sure if they just don't know how to talk to me anymore since we are basically on different planets now. They worry about graduating college and boyfriends while I worry about insurance and trach supplies on top of being a mother, wife, and house keeper. I'm not mad or even sad that those people aren't in my life anymore. They obviously didn't care that much to begin with if they can't even take the time to ask how I'm doing dealing with all of this. It's just hard having no friends. When I'm bored I call my mom to come hang out with me or walk over to my grandma's house. Not that I don't like spending time with my mom and grandma but it's just not the same as having a "girlfriend." 

Being the primary caregiver to a disabled child is definitely something you never think will happen to you. I remember seeing parents with a child in a wheelchair and thinking Gosh, that sucks and I'm so glad it's not me. I felt sorry for them. I'm here to say that yes, it does suck. But there is nothing to be sorry about. Feeling sorry for myself or my son has not made Noah any better so I certainly do not need other people doing the same. Just pray. And pray fiercely. Pray that his doctor's will give him the best treatment to make him comfortable. Pray that we get the equipment that we need to help him be happy. Pray that we make it through each day with smiles still on our faces. Just pray.

Helping Others

I am so fired up right now! I just got home from my first meeting with a soon-to-be trach family. I was asked a few days ago by the trach nurse at Dell to possibly talk to a family who was in the process of deciding to get a trach for their baby. I said "Heck Yes!" and she said she would pass on my phone number to the family. Saturday rolled around and I still hadn't heard anything so I called up to the NICU myself and spoke with the charge nurse and asked her to give my name and number to them. The mother called me about an hour later and I was beyond excited! She said she would need to call me back Sunday morning but it was possible that we could meet that day. She called me this morning and we planned to meet at 2:30 in the family room right outside of the NICU. I loaded up Noah at about 1:30 and, after pulling over 3 times to suction, we made it just on time.

The family was so grateful to meet with Noah and I. I brought along some pictures of Noah before his trach, right after his surgery, and then a few of us over the months. I wanted them to understand exactly what their son would be like when he comes back from the trach surgery. Nothing can totally prepare you for seeing your baby with a hole in their neck and completely limp from sedation. But I hope that explaining it to them beforehand and letting them see the picture of Noah will help ease at least a little bit of the heartache they will feel in that moment. I also wanted them to see that even though this is not what we planned, we still go on as a family. I showed them pictures of Noah with Santa and the Easter Bunny, pictures of how sweet Oliver is with him, and pictures of us being our version of normal.

I also tried to reassure them that they are making the best decision for their son. It is a hard choice to make but for some people like us, we didn't have a choice. The trach was our last and only resort. This is not an easy life but at least I am confident in Noah's airway. It's manageable. And best of all, we got to bring him home with us!

I really feel like I made a difference today. Noah's story and the life that we are living offers people hope. Hope that life does go on after the trach. Hope that you will get through this. And hope that everything will be okay. This is really becoming a passion of mine. I know I don't have all the answers. All I have is our story. But if our story can ease someone's fears or make someone feel at peace with their decisions, then I want to share it with as many people that will listen.

Picture Perfect

I know I post a lot of pictures, but I just can't help it! My kids are too cute!

We had a little photo shoot...

Neither one would be still long enough to get a good picture...

And Noah sleeping on his tummy...

Beyond Thankful

I cannot describe in words how wonderful these last few days have been. It is a great reminder of how truly blessed we are to have such amazing friends, loving family, and God's angels helping us on our journey. We started the fundraiser hoping to make around $1,500 to cover our travel expenses to Indianapolis for the PMD Family Conference. After just 12 hours of the fundraiser being posted online we had met over 70% of our goal! Now I realize that some donations have been quite large and we are obviously beyond grateful for the large amounts, but even the smaller ones have pushed us closer to our goal. Even those of you have shared the link to the website have helped us reach so many more people than we ever could by ourselves. And for that I would like to say thank you! Some donations have been anonymous and we may never know who contributed those, but we are still so blown away by the generosity of every single person who has helped us in some way.

This conference means so much to our family. We are hoping to educate ourselves about PMD so we can know "what to expect" (although we will never really know since the course of this disease varies so greatly) and how to give Noah the best life he can possibly have. It is also important for me to meet other parents who deal with the same things I do. It is hard to relate if you don't have a special needs child so I am sooo looking forward to sharing, venting, ranting, etc. to people who get me. 

I wish I had something to give back besides just a simple thank you. But since that is all I have to give at the moment, I want to say a big THANK YOU to everyone that has contributed to Changing Noah's Life!

Y'all make Noah happy, too!

Here is the link to the fundraiser so you can check out our progress so far: Change Noah's Life Fundraiser

Change Noah's Life!

We are starting a fundraiser for Noah! There is a PMD Family Conference in Indianapolis, June 20-23, and we are raising money for travel expenses and hotel stay for the four days. Please follow the link below to find out more about our baby bottle fundraiser or you can donate directly through Pay Pal. Even if you cannot donate, please share the link on your Facebook to help spread our cause to as many people as possible. Thank you all for your continuous love and support!

Here is the link: Change Noah's Life Fundraiser