Yesterday Katie got her last RSV shot of the season and was a champ. Only cried for a moment then was like okay let’s get the hell out of here. She fell asleep on my chest before her shots so you could say she had a rude awakening the poor thing.
Now she weighs a whopping 17lbs 8ozs which is a 12 ounce gain since the 1st of the month. Apparently the extra calories are really working thank god. It hasn’t been easy and I’ve been puked on more than my fair share but in the end it’s worth every clothing change. She’s teething again so I get to spend a fair amount of my time massaging her gums. I wish she would chew on her teethers but she just doesn’t like to put things in her mouth. However her lovely OT lady suggested these things called jigglers which vibrate that she loves to put in her mouth or on her face. Here is the link in case you are having similar issues with your preemie. (http://www.nukbrush.com/nukbrush/abilitations-jigglers-massager-elephant-and-gator-chewable-oral-massager-pair-of-2). Wow that’s a long url.
Not much more to report so instead here is some happy baby pictures.
The anxiety never stops. It gets better but it seems to never stop. Changing her trach ties when she pukes on them is a traumatic event every time not only for her but for me as well. She hates her neck being touched. She’ll cry and scream and do anything to get away from you which could end up with her decannulating herself which makes the situation even that much more complicated. Luckily I got the ties on and her settled down without to much a do. Except for me sobbing and her sobbing at the same time. Though she stopped crying when I did and started laughing which might mean she’s slightly evil.
I went out to the garage and punched the door out of frustration, which wasn’t a great idea because my arm really hurts now. I can’t wait until my punching bag comes tomorrow!
Anyhow I’ve been spending some time on the Glow Baby App and this lady was asking if anyone else had NICU anxiety and I decided to respond and tell a short version of our story. I hope it helps her because I literally go out of my way to not pass the hospital she was in for so long. Unfortunately that is where my shrink’s office is so every other month I get to visit the one place I hate being with all my heart.
I’ve already made the decision to not having any more children because I honestly don’t believe I could survive another NICU stay or at worst losing another child because of my shitty cervix. Not to mention I know Mike couldn’t survive having another baby that could end up in the NICU. It was a hard stay and he already has some trouble accepting that we don’t have the typical baby. I’m not saying he’s a bad dad or even ashamed of Katie just the last 16 months have worn him down and he’s having trouble seeing the light at the end of the tunnel. He’s been great with the OT lady and has been trying to learn how to feed Katie without her throwing up on him. 🙂
On a lighter note we’ve been watching “Avatar the last airbender” cartoon series and she seems to be enjoying it. Also I got my new rain boots today so yay today wasn’t all that bad.
Preface: This is not something I ever talk about and I try to bury it deep within myself because it’s easier to block it out then relive it but I think it’s time to tell the story.
The day that broke me
FDR once said “a date which will live in infamy” in response to the Pearl Harbor attacks. For me May 1st 2012 is my day that will live in infamy, it’s the day we lost our son.
I knew something wasn’t right as the night of April 30th dragged on I was in more and more pain like he was trying to kick out my cervix. I called my OBGYN and she assured me it was perfectly normal for them to kick so hard down that low believing her I tried to sleep but couldn’t because the pain was unbearable. Around 5-6am I called the office again and talked with another OBGYN who told me to immediately get to the ER. I woke up my husband and within 3o minutes I was laying on a hospital bed with only that thin hospital gown on waiting for a doctor to come see me and do an ultrasound to see what was going on.
The ultrasound tech and the doctor came into the tiny room we were in and preformed the ultrasound. My gut feeling was right something was wrong. His right foot was completely out of my cervix. For the next few hours all the doctors, obgyns, nurses and anyone else who talked to us wouldn’t tell us what was going to happen, just platitudes. Maybe they could stop the labor.
I have never been so grateful for the truth when the specialist came in and told us I was going to give birth in the next hour it was happening and there was nothing they could do to stop it. (Funny enough I remember him the best because he was an older gentlemen with a red and white polka dot bow-tie on). He was spot on because at about 3pm (I’d have to get out his birth certificate to remember the exact time) William Lynn was born.
I was 19 weeks and 5 days pregnant, he shouldn’t have come out alive but he did. He breathed on his own for 3 hours before passing away. At first I didn’t want to have pictures taken or to even hold him because it felt like what’s the point. I came to my senses and held him almost the entire time he was alive and I have a few pictures of him that I still after almost four years cannot bear to look at. When he took his last breath the nurse was kind enough to take him from me and put him in a really pretty basket.
At that point my husband went off to make the worst phone calls of his life. We were so hopeful this time the pregnancy would go well seeing how the last one the baby died in the womb at 12 weeks and we didn’t find out until the 13th week but that’s another story for another time.
The grievance counselor came in later and gave us the pictures of Will along with his birth certificate that we had to fill out and a death certificate too. Actually she’s the reason he was named Will because and I quote she said “He had a strong will to live”.
I was oddly calm through out all this until I looked at his poor body still in the basket and rigamortis had sat in. I had actually blocked this memory for awhile but it came back with a vengeance a few years later while I was working. Talk about a kick in the stomach. He was just laying there in the gingham lined basket no longing living and looking like a frog, that’s the only way I can describe it. It was one of the most terrible things I’ve ever seen. You expect so much when your pregnant, what you are going to name them, what your nursery is going to look like, who he’s going to look like, will he have my eyes or Mike’s, on and on. Instead there I was staring down at my dead son trying not to break and failing miserably at it. I ended up laying into a nurse to take him away so he can be cremated with some damn respect.
Luckily I got to go home that night because there was no way in hell I was staying in that damn room another second then I had to. I know I’m skipping over parts but I don’t want to write forever. I will say this 2012 sucked for multiple reasons. In January my grandpa who raised me died in January his name was Roland Lynn hence Will’s middle name being Lynn then four months later we lose our son because I suffer from an incompetent cervix.
I finally put his ashes and all his pictures, baby book and the rest of his stuff in a chest that I refurbished and one day I will tell Katie about him when she’s older like much older. One thing I didn’t put in the chest is the tiny blue teddy bear they gave us for him. I carry it in my purse with me everywhere I go every single day.
I’ve leave you on a bright note though because this is depressing as hell. Without Will there would be no Katie. I would have never know I have IC and maybe this story would have been about her instead. I thank the powers that be every day for that little girl. She’s been something else with all her health issues and being born way too early but she stayed in 7 weeks longer than her brother because I got a cerclage placed thanks to the tragedy of her brother’s short life she got to live and survive to be the awesome little girl that she is today. So thank you Will for giving your sister the chance to live.
I keep meaning to update this blog but every time I start I realize I have nothing but issues and complaints and who wants to hear about that right? I will say this it’s amazing how alone you can feel even if you have friends, family, and are married.
I get told all the time what a great mom I am and how involved I am with Katie’s therapy
and I think to myself how far behind would she be if I were not here or what would happen to her and her progress if I were to die (not by my doing just to assure you). OT and PT are only out here 4 times a week total so about 4 hours a week she gets therapy, the rest is up to me and only me. I got some books from the library about therapy because I’m at the point I’ve already learned what I can from her therapists. It would be lovely to have actual help with her therapy but c’est la vie. Thank god or science or whatever for anxiety medication or else I might be on the news for randomly strangling some poor person in Meijer for running into me.
On a brighter note, Katie is getting better and better at standing and I think with help from this book I have I’ll have her crawling in no time.
Imagine you have a family member that needs nursing care. You have two options, a nursing facility or home nursing. Which would you choose. Now imagine that family member is your child. I’ll wait……….
Have it pictured in your mind? Okay good.
Nursing facilities can be great or if you are unlucky enough to have your child in extended care in the NICU or PICU you will meet some of the best nurses but it’s nothing like being at home. We were lucky because the NICU Katie was in, she had her own private room and a little privacy. In lots of NICU’s that’s not always the case. Twenty babies put in one room with no privacy, no alone family time, not to mention the chance of infections spreading from baby to baby. For example NEC (Necrotizing Enterocolitis) is contagious and no one knows why. Katie was unfortunate enough to have NEC twice and could have passed it on to another baby if it wasn’t for us having a private room and always great nurses that sanitized everything. Not to mention the stress it puts on the parents and if you have pets your pets too. Never being at home sucks. No home cooked meals, no time to walk the dog. I feel terrible for Jelly having the only time outside being when she needed to go potty. Luckily she’s a pretty chill dog so other than a little separation anxiety she was perfectly happy sleeping on our bed all day.
It’s been so much better having home nursing than being in the hospital. At home you have some semblance of normalcy. Like taking the dog for a much needed walk, oh my god home cooked food and not greasy McDonalds for dinner is delightful. Granted you have an extra person in your house half the time but you get to be home with you baby or child and do normal things like teach them to crawl, walk, play, and talk and so much more. Studies have proven that children grow and do much better at home with their parents than in a hospital like setting and I’d like to believe that Katie is a perfect case of that. Since she’s been home she’s gained 7lbs, can stand, tries so hard to put her feet in her mouth, talks around her trach and much more. I don’t think we would have progressed this far if she was in the hospital because at home I can devote all of the day to her gaining weight and skills.
We get 12 hours a day of nursing for Katie. One nurse works 9a-9p 3 days a week and the other 10-10 3 days a week and on Friday’s they alternate. I honestly don’t know what I would do with out these wonderful women. One has been with us since the day she’s come home and I absolutely adore her. She is so good with Katie and Katie loves her. Hell I love her. She’s professional, I never once have to worry about her alone with Katie and she’s become apart of our family. She is the most professional nurse I’ve ever had the pleasure of knowing. She knows everything about babies with trachs and is patient, kind, and just all around a great person. The other nurse has been with us a few months now and she is also very good with Katie. She likes to play with Katie and Katie adores her as well. I’ve seen her physically get teared up whenever Katie cries that is how much she cares for her charge. They both make life easier for me because I know I can go to sleep and they know what they are doing and don’t have a moment’s worry about them injuring or putting Katie is a dangerous situation. I can’t tell you how lovely it is to know they care for Katie almost like I do. They stay up all night to watch over her kind of like guardian angels if I really think about it.
Recently I found out that home nursing wages were capped off and have stayed the same way for the last 20 years. So the last time they could get more then the capped off amount I was 12 years old. I’m 32 now and that’s just not acceptable. These women and men spend half of their lives taking care of people who otherwise would have to be in the hospital. They give their time, effort and live to the people they take care of and yet cannot get better wages and that is ridiculous. Katie’s bill for the 7 1/2 month stay in the NICU was 1.3 million dollars. 1.3 MILLION DOLLARS. Just the room alone was 600k for 7 months and I guarantee her 9 months of in home nursing hasn’t come close to that amount. Why nursing companies and parents like myself have to fight to make sure the nurses are paid what they should be paid is not right. These are people’s lives we are talking about. Better pay for nurses means you get to hold onto the nurse that are amazing and hopefully attract more nurses to the private sector that will be just as great and maybe be able to weed out the nurses that are terrible at their jobs.
We haven’t always been so lucky with our nurses. Since Katie’s been home one left our case because she fell asleep on the job (big no no) but she was still an awesome nurse just not meant to be on night shift. Two I had them left go. I’ll admit one was for a somewhat petty reason, she wouldn’t stop arguing with me over Katie’s care and overstepped the boundaries. She didn’t like her feeding schedule and would change it on her own accord even though I would confer with multiple people on the schedule to make sure she was getting what she needed. I didn’t feel like arguing with someone 3 days out of the week so I let her go. Once again still a good nurse just didn’t respect that I’m Katie’s mom and she isn’t. The third OMG the third one I could write an entire blog on. I won’t go into it because I don’t want to slander her but let’s just say I thought/still think she’s too dangerous to be anyone’s nurse that has breathing issues or a trach or anything that involves a situation where the patient could aspirate. My point being you are going to have bad apples but if home nurses could get better pay you could weed out the bad ones and attract new talent that want to do their best for their patients and genuinely care about their work and how it effects the families that have them in their home.
I should write a book instead of a blog lol this one is so long I apologize
Monday was a terribly exciting day. Katie got to meet our State Senator Jim Marleau so he could see a patient that has home care and to talk about hopefully getting raises for the lovely nurses who take such good care of babies like Katie that are on life support. Kind of a case study you would say so he could see what the difference is from being in the hospital versus the home. He was very pleasant and kind and honestly I love his health voting record. This gentlemen has voted countless times for expanding medicaid for those who need it, medical marijuana and much more that I can’t recall at the moment. Though for those who are interested this is his voting recordhttps://votesmart.org/candidate/key-votes/38124/james-marleau#.Vtnn0fkrLIU. I don’t agree with everything he votes yea on but he seems to genuinely care for the people that need Medicaid and the nurses that take care of patients in home. All in all it was a great visit and I plan on keeping him updated on her progress such as when she gets the trach removed. Also Katie was such a good baby and charmed everyone as she always does.
Then later she pooped all over the place and I had to throw out a pair of her pants it was that bad.