Tuesday, February 10, 2009

A busy post

First of all, a good friend made sure we knew about this:

There is a fundraiser for Duke Childrens today through Thursday. It is being hosted by a local radio station. Please go here for more information. There are SO many nice programs for families of sick children at Duke and those programs are funded via fundraisers such as these. If you have the time and maybe a few dollars to spare, please call and make a donation.

Riley had his 4 Month old pediatrician appointment today. He only gained 1 ounce since last weeks weigh in so he's 10lbs 14oz and 23 3/4 inches long. he goes back to the GI doctor this Thursday, so we'll see what kind of changes he makes to his feeds. he got 3 shots and we have to ask the GI doc about the rotovirus vaccine before he can have it. Other than pretty much NO weight gain, he looked great and is doing all the things a normal 4month old should be developmentally. Always good news considering the amount of time he was hospitalized.

I got the nicest message today from a woman I have never met. Somehow, she and an online group of mommies got word of my blog and they have followed it daily it sounds like. But the interesting part is she is struggling with an incompetent cervix and feels fairly certain that she will be having a fairly young preemie in the near future. She asked me if I could give her any advice for weathering months in the NICU. Wow. I'm not sure if anything I would have to say would be of much use, but I replied back to her earlier today and as I was sitting here just now, I thought to myself: someday, someone may google something that brings them to my blog and this sort of thing could MAYBE help them. It may not, it may just be a bunch of words and be of no interest. But just in case, I'm gonna copy and paste what I emailed back to Amanda today. I know I wish these were things that I knew about when Riley was first born and got sick. Feel free to stop reading now!


1). The nurses your baby will have can be your biggest allies. Get to know them and respect them.

2). With that in mind, when you meet a new nurse that you really like and are comfortable with, ask them if they would be on your babies team. These nurses are worth their weight in gold and then some. You WILL have to leave your babies side while they are in there, and when you know you have GREAT nurses caring for him/her, it makes leaving them SO much less stressful.

3). You may have some nurses that you really dislike. This only happened a few times for us. We found nurses fell into 3 categories: they were either FANTASTIC in every way....or, they were a really good nurse, but it always seemed like just a job, not a passion like others...or, we didn't want them caring for Riley ever again. The ones that fit the bill of the last type, we politely asked that they not care for him again. YOU HAVE THAT RIGHT. We had 3 the entire time, but Duke and NHRMC combined that we asked not to care for Riley again. The rest of our nurses were great. True, some treat it like it's just a job, and that is disheartening compared to the one's that are truly passionate about the work they are doing in the NICU, but as long as they are a good nurse and know what they are doing, it was ok.

4). If your baby is in a teaching hospital, prepare to be BOMBARDED by residents (new doctors just out of med school), fellows (doctors who have completed their residency in pediatrics and now are specializing in neonatology) and attendings (the docs who have been through all their training and are in charge), Neonatal nurse practitioners, the bedside nurse and doctors of all sorts of other specialties (and likely residents as well) depending on your babies needs. It's confusing and it's frustrating. Learn to ask your questions mainly to the fellows and attendings, unless you have a REALLY knowledgeable resident. We lucked up with 2 really knowledgeable residents and then other not so knowledgeable. The residents rotate thorugh every 2 weeks, so you'll see a lot of different ones of them.

5). Make friends. You'll spend a LOT of time at the handwashing sink and see a lot of other parents. Speak to them and make friends. It helps. a lot.

6). After your babies been in the NICU for 2+ months (just a random figure), resist the urge to smack the "baby daddy" complaining at the handwashing sink that his baby been in there 5 days and he's sick of it already. Smacking him won't help and think back to how hard it was for you when YOUR baby had been in there 5 days already. It takes a while to get used to NICU life. After awhile, unfortunately, you'll develop a routine and while it's still hard, it becomes life.

7).Spend time with your baby. This may seem like a no-brainer but you will see, it's really not for everyone. Take a book in and read to your baby, or just sit there and read to yourself. Just your talking to the nurses and people that come by, your baby will hear your voice and know your there.

8). Do as much of your babies care as the medical team will allow. Obviously, I didn't have a preemie, so he was never in an incubator, but I do know that parents are allowed to change diaper of "box babies" and get to lift them up for bedding changes and things of that nature until they become less fragile. Do as much as you can. be there for their assessment/touch times as much as possible so you can do these things. as they get older/healthier, do even more.

9). With number 8 in mind, ask questions. Don't assume that you can't do things. You never know until you ask. WE did all of Riley's care at NHRMC during touch times with the exception of listening to his heart/lungs/bowels with the stethescope. We took his temp, changed his diapers, emptied his ostomy bag, changed his ostomy bag, bathed him, dressed him (ok the nurses dressed him sometimes cause they liked to but you get the idea). doing these things really make you feel more like a normal parent and it helps.

10). The monitors are scary. They beep and alarm and will nearly give you a heart attack about 50 times a day in the beginning. Again, ask questions so you'll understand what they are and do and why they are alarming. Then, when they make all that noise, you'll be able to look for yourself and see if you need to be alarmed or if a sensor just came undone.

11). google, and the internet in general, can be your best friend or your worse enemy with a sick baby. Use with caution.

12). as you become more knowledgeable about the ins and outs of the NICU, talk to others and help them.

13). This is SUPER important. There seems to be 2 kinds of NICU handwashing soaps. One is something like Chlorohexidine or something like that and the other is Triclosan. They will be in a dispenser. Both of the NICU's we have experience with seem to use both at different times. Almost like it just depends what was on the cleaning ladies cart when she refilled the dispenser. Either way, if yours uses the Chlorohexidine kind, BEWARE...this stuff with eat the skin right off your body. Prepare for sore raw hands and arms and stock up in some GOOD quality lotion like gold bond. USE IT and use it prolifically.

14). THe smell of NICU soap will likely haunt you and you'll always remember the smell of it.

15). WASH YOUR HANDS and use the sanitizer stuff at your babies bedside frequently. Another thing you think would be a no brainer but JEEZ some people just don't do it and these babies are FRAGILE. The soap is like acid, but losing your skin is much better than taking germs to your baby.

16). I think the last piece of advice I can think of is this: remember...YOU are an important part of your babies caregiving team. Be involved in his/her care and decisions. If something seems not right and you can feel it to the depth of your soul...act on that feeling. Do not be intimidated to state your opinion by people with M.D. behind their name. Your his/her mother and don't you forget it or let anyone else make you feel like less of a person because that is "all" you are. That is the MOST important thing/person of all for your baby. Be there, learn about your baby, and stand up for him/her. You know them best.

Amanda replied back to me and said it struck her funny that I didnt' say eat and sleep. That is because personally, I HATED when people told me to eat/sleep. I KNEW I needed to eat and I KNEW i needed to sleep. Knowing and doing are two different things, and if you have a friend or family member with a baby in the NICU, there is no faster way to alienate yourself from them then to harp on them about eating/sleeping. We ate and we slept when we could. It wasn't the healthiest and it wasn't a lot of food usually, for a very long time at least, but we did it. We slept very little and a lot of times sleep was more like lying in bed and dozing for a couple hours, but it was what it was. If you really want to help them get some rest, offer to sit with their baby for a few hours so they can take a nap or something of that nature. Otherwise, leave them alone about their eating and sleeping habits. :o)

SO that is that. I also plan to post our step by step ostomy care process, but that is a project for another night. :o)

12 comments:

Brad, Kellie, Lucy and Baby Carter said...

Very well said! I agree with all of them, but especially the one about making friends in the NICU :) You and Jay have no idea how much easier you made our NICU experience just by being our friends.

Jenny in Chapel Hill said...

All agreed. But the one that strikes me is #14, the smell of the nicu soap. Six years later, I STILL am haunted by that smell and it makes my stomach hurt. They say smell is the sense that is most closely related to memory. I believe it. Luckily, some of the other stuff starts to slowly fade away (like the alarm noises on the monitors, bong bong bong...).

Anonymous said...

#14...Yep!
Christie

Anonymous said...

Praying baby Riley's GI appointment goes well tomorrow. So happy he is doing so well. And, yes, the NICU soap will take the skin right off your hands! Love you, Pauline

Fer said...

Agreed, you are so nice by writting everything down and email this woman with your advice :)

Jenny in Chapel Hill said...

Regarding the raw skin from the ostomy bag: When Neil and Evan had their ostomies as newborns, I feared their skin would always be red and raw and painful, but once the ostomies were reversed (at 4 mos old), it did clear up and now the skin around the scar is fine. It did get pretty bad, though, with those darned bags.

Vince and Patty said...

Thank you for sharing this information. Our baby, who is recovering from CDH, has been in the NICU for two weeks today. We are slowly learning our way through surviving in the NICU and every bit of advice helps!

:-) Patty and Vince

Anonymous said...

Wow..that was great advice Lindsey..you might want to make a NICU survival guide for parents.

Alice

Jerry's Blog said...

Christy and I (Jerry) enjoyed reading Lindsey Sousa's advice for parents who expect to spend extended time in the NICU. It was exceptionally well written and needs to be read widely.

Our baby, Mercy Grace, was born about the same time as baby Carter and Baby Riley.

The parents of the three babies become friends and we kept asking each other about how the babies were doing. We were an impromptu support group in the lobby, at the washing sink, etc.

I really related to the advice about the lotion needed to use after regularly washing with that powerful chemical soap that caused rashes to form on my hands and even worse on Christy's hands. Looking back, I should have used lotion.

It is so nice hearing of the positive progress of baby Carter and seeing his big smiling face that is now sporting a lone tooth!

God bless you. Our babies are worth more than their weight in gold and I think every one of us parents would be willing to go through it again ten times over to have our precious babies in our homes as we do today. Just glad we don't have to go back!

Jerry & Christy, parents of Mercy Grace

Jerry's Blog said...

Christy and I (Jerry) enjoyed reading Lindsey Sousa's advice for parents who expect to spend extended time in the NICU. It was exceptionally well written and needs to be read widely.

Our baby, Mercy Grace, was born about the same time as baby Carter and Baby Riley.

The parents of the three babies become friends and we kept asking each other about how the babies were doing. We were an impromptu support group in the lobby, at the washing sink, etc.

I really related to the advice about the lotion needed to use after regularly washing with that powerful chemical soap that caused rashes to form on my hands and even worse on Christy's hands. Looking back, I should have used lotion.

It is so nice hearing of the positive progress of baby Carter and seeing his big smiling face that is now sporting a lone tooth!

God bless you. Our babies are worth more than their weight in gold and I think every one of us parents would be willing to go through it again ten times over to have our precious babies in our homes as we do today. Just glad we don't have to go back!

Jerry & Christy, parents of Mercy Grace

Jerry's Blog said...

Christy and I (Jerry) enjoyed reading Lindsey Sousa's advice for parents who expect to spend extended time in the NICU. It was exceptionally well written and needs to be read widely.

Our baby, Mercy Grace, was born about the same time as baby Carter and Baby Riley.

The parents of the three babies become friends and we kept asking each other about how the babies were doing. We were an impromptu support group in the lobby, at the washing sink, etc.

I really related to the advice about the lotion needed to use after regularly washing with that powerful chemical soap that caused rashes to form on my hands and even worse on Christy's hands. Looking back, I should have used lotion.

It is so nice hearing of the positive progress of baby Carter and seeing his big smiling face that is now sporting a lone tooth!

God bless you. Our babies are worth more than their weight in gold and I think every one of us parents would be willing to go through it again ten times over to have our precious babies in our homes as we do today. Just glad we don't have to go back!

Jerry & Christy, parents of Mercy Grace

Jerry's Blog said...

Christy and I (Jerry) enjoyed reading Lindsey Sousa's advice for parents who expect to spend extended time in the NICU. It was exceptionally well written and needs to be read widely.

Our baby, Mercy Grace, was born about the same time as baby Carter and Baby Riley.

The parents of the three babies become friends and we kept asking each other about how the babies were doing. We were an impromptu support group in the lobby, at the washing sink, etc.

I really related to the advice about the lotion needed to use after regularly washing with that powerful chemical soap that caused rashes to form on my hands and even worse on Christy's hands. Looking back, I should have used lotion.

It is so nice hearing of the positive progress of baby Carter and seeing his big smiling face that is now sporting a lone tooth!

God bless you. Our babies are worth more than their weight in gold and I think every one of us parents would be willing to go through it again ten times over to have our precious babies in our homes as we do today. Just glad we don't have to go back!

Jerry & Christy, parents of Mercy Grace

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