If there is anything you learn from being in the NICU for five months its that taking copious notes to what is happening not only around you but with your child is imperative. Anything that was said to me was not only documented in an agenda, but any specialist, nurse or doctor that touched, probed, or ran a test on EV or spoke to me was also made record of.

I kept an agenda (which I still have because mama is not a fool) that allowed for a lot of note taking space as well as had a space in back for any documents provided to me (I have the originals in a safe in our home, but all copies were kept on hand) such as; ultrasound pictures, x-rays, etc., were kept here as well. Being in a doctorate program while being cooped up in a hospital allotted me a lot of time to fine tune my organizational skills. To this day I remember one of EV's specialists who although was trying to sound uninterested, came off more concerned and was quite inquisitive regarding what I was documenting, who was being documented, and how it was being documented.

Fast forward to recently where I was told that once again I have polyhydramnios. I documented the date, the diagnoses and any information that was provided to me, such as next steps. As mentioned, I was told that the odds of this ever happening again were slim to nil. With my appointments between my OB and Perinataologist being staggered, I was given the diagnoses with my Perinataologist and a few days later, I was sitting with my OB going over the numbers again and having an additional ultrasound with her. I had read a few cases where the fluid goes down, but considering my past experience, I wasn't hopeful.

Imagine my surprise when the glaring number of 27 was now being told to me as 21. My OB went into detail regarding how she measures the pockets and how not everyone's rule of thumb is the same when it comes to where and how they are measured, but the way I looked at it, even if I was still 27, the fluid hadn't risen therefore it was "normal" for me.

Near the end of the appointment, the nurse had mentioned that a script had been sent over regarding an additional diabetes test. An additional test means that it goes through Quest Diagnostics and rather than the traditional one hour, it is three. I was unsure of why I was taking another test as the original came up negative and there was nothing in the results that would imply I would need further testing. Plus, three hours is a long time to fast for a pregnant lady, which really would be closer to ten hours if you are counting the fact that I am not eating when sleeping (or so I think).

Honestly I thought it kind of strange for such a large test to be requested without any conversation with me when I was just there the week before. My OB and the nurse where both very specific regarding not to take the test too late in the day and if there wasn't any availability for several weeks out not to bother with it. Due to the only availability and time slot (more the time than anything) I decided to go with my OB's suggestion and not proceed with the test. Honestly, at 7 months what really could be done?

The following week at the perinatalogist appointment I was received with a lot of giggles and statements about me not wanting to take the test and going half a day without eating. It sounds a lot cuter then it was, I am not sure why I was the only one that seemed to have an issue with this matter. Upon telling him I did not feel comfortable with the test or the only time available, he responded with; "wow, (insert my OB's name), must have seen something in that original gestational test for her to recommend that you take that diabetes test." Cue shocked looked from Hubs and I as I reminded him that he is the one that requested it and that I had never been informed by his office of the test and that my OB is the one that had to instruct me that he wanted it completed. Now came the "oh, of course's" "now, I remember" and now cue my skepticism that this was going to turn into how Dana became a medical case study again....no thanks...

Luckily, my fluid numbers stayed at 21, so I was able to stand by my stance of not taking the test.

Fast forward and cue internal high fives all-around, my most current appointment once again had me at that magic number of 21. Yes, the number is on the higher end of normal, but the fact that it is not increasing is a miracle and not one I was expecting. I will say this, there has been nothing that the doctor has spoken to me about where he has pushed me for testing. I have been told by numerous people including his own colleagues that he is extremely conservative when making suggestions or expresses that it is pertinent to have the testing done. Everything has always been a "if you want" precautionary option. By no means do I want to make it sound like I am a case study and every time he gives me advice I do the exact opposite or that I do not think his medical concerns/opinions are valid. With nothing showing on the diabetes test that a second test was warranted, I did not feel it was in my best interest to go a half a day without eating or drinking anything but sugar. Not to mention, I had the gestational diabetes test with EV as well and nothing out of the norm had come up then either.

Do not take this post the wrong way, I 100% trust this team, their reviews are stellar, friends of mine that are pregnant are currently going to both of them and I trust both doctors implicitly as well as their judgement when it comes to anything that involves me and the babe. This is more of a cautionary tale of how you can not only become better informed, but how you can feel more in control. Organization has been key in both these pregnancies.

Which brings me to my everyday essentials...

I went from being that girl who went from just needing to carry a clutch to having the memory of a hamster and needing to have everything with me at any given time. I recently bought the structured Daisy Rose tote (above) on Amazon and all I can say is that I am in love. The quality is insanely good, it holds everything and more, its a dupe without having that faux dupe look, and it holds everything and more without it being too heavy. At the suggestion of every single person that has an LV Neverfull and with this tote being similar in structure, I bought this felt insert in large from Amazon (Prime girl all the way). The insert is everything I didn't know I needed, it keeps everything in separate compartments and makes everything easy to find. The slim section I use for both my journal and my agenda and having a structured section for it, allows for the agenda to continue looking nice and from anything falling out. I actually purchased an agenda during the going back to school time at Target, so its a manageable size, and fits in this section quite easily. Having an agenda that easily fits in your bag without making it cumbersome will help you get in the habit of taking it with you and keeping it in your bag at all times.

I know an agenda shouldn't make such a big impact, but it honestly does. It will provide you with the comfort of feeling in control, when everything else might not feel that way. In regards to keeping the agenda with you at all times. I have had doctors call with questions or updates and having it on me allows me to put all the new information in directly after the conversation or if they ask me any questions, I can revert back to any information previously given. This keeps me from going "I dunno" and looking like that person who nods and appears to be listening intently, but is really singing 90's song lyrics in their head #iamtotallythatperson #sorrynotsorry.

The longer EV has been out of the NICU, the longer spaced her specialist appointments have been. It is great because it obviously means my kiddo is making huge strides, but with appointments so spaced out, it also means they are easier to forget (#pregnancybrainisarealthing). I know a lot of people use the calendar in their phones, but I just happen to be one of those people that need the note section and writing things down helps me commit it to memory. Having an agenda where I can keeps notes also allows for reflection at the end of the day (i.e. if your appointment was in the morning or if your significant other/emotional support person could not make it to the appointment). I would not be able to tell Hubs a quarter of the stuff that happened if I didn't write it down or if we needed the time later to make appropriate decisions or research what we may not be familiar with. I know we are all adults and we should know how to take notes, but these are just a few reminders that have helped me along the way....

For my other Memory of a Hamster Mama's out there!

• Do not feel that you have to hide the note-taking from your specialist, often they will provide pamphlets and add'l information on the topic you are discussing. Also clarify spellings of words you may not be familiar with. Google or Alexa will thank you later (your search history not so much).

• Do not be afraid to ask follow-up questions or ask for a definition/examples of terminology being used. Sometimes when it is not your first child, they assume you are an expert and already familiar with some of the vernacular.

• Develop a short-hand that you are comfortable with. In the beginning I often abbreviated too much and ended up leaving pivotal details out or couldn't decipher what I meant.

• Take five or ten minutes immediately after the appointment to sit (even in your car) and jot down the most important parts of the appointment while everything is fresh (you can always expand later). This is also good if you are not comfortable writing notes in front of your doctor.

• Make sure to note specialist names or facilities that are being mentioned & on the date of future appointments write down any questions you have while you were taking notes. I am the queen of...

• Dr: Is everything else going alright? Me: Yup. No complaints! Meanwhile I am out of breath, appear to have a scratch infection and have developed a strange rash underneath my armpits (TMI?) #pregnancybrainisarealthing. The hubs is the one that goes "ummmm don't you want to tell them about..." #heisasaint

• Make sure that your agenda either has pockets or a place where you can binder clip information given to you. For me, I included test results, prescriptions, ultrasound pics, physician/specialist/appointment reminder cards, etc.

• I also had multi-colored sticky tabs that I color coded, so that if EV had any tests done or saw a specific specialist, I could color code it so I could easily refer back.

• This proved important when she had stint placed in her arm, developed a bacterial infection ("supposedly" unrelated) and soon after a 'vegetation' on her heart was found which was sworn up and down that they had no idea how it developed but it 'definitely' was not related to the bacterial infection #cueeyerollemjoii. Luckily the vegetation just chills there and does nothing...

Notes will also afford you the opportunity to research the options that may be given to you and provide you the time to reach out to specialists for second opinions. Because there were so many different people that I feel were involved in saving EV's life, I felt that every test was necessary and any option was vital, this leads to not being afraid of the word "no" or asking for time to 'think it over' aka calling every mama parent you know for insight. A parent's intuition although may not feel like it, can trump that of a specialist. not always the nicest question, but if I had a relationship with them I would ask what journal articles they were working on to see if any of the 'options' were related to their study. You'd be surprised what doctors all of a sudden want to "look" at when a child's case has never been seen in that hospital before, or you either for that matter.

Towards the end of your NICU journey, if you find that a stalemate is occurring and you reach where enough is enough my favorite phrase became I want to speak to the Director of the Hospital/Department. They will actually have to set up a meeting with the doctors, specialists and nurses that have been working with your child. There are plenty of tell all signs (body posture, eye contact, verbal cues, etc.) that are given when everyone is in one room versus seeing individuals periodically throughout the week. Under no circumstances are you to be afraid to ask for this and remember for the rest of that little person's life, their only advocate will be you and don't you forget it!

So take those notes and stay organized and informed no matter the eye roll, sideways looks, whispered tones because at the end of the day it will save your sanity...

#polyhydramnios #idiopathicpolyhradmnios #pregnantand40 #motherhood #pregnancy #prenatalcare #NICU #preemiemama