A Day in the Life of my IVIG Treatments

So far, I have had a total of 13 IVIG treatments this pregnancy, and honestly it sometimes feels like I’ve had 100 treatments. IVIG treatments differ for everyone and it’s something that I have to do to keep my babies healthy. It can be grueling both mentally and physically but there is literally no other option for NAIT moms to have a healthy pregnancy.  I thought I would take some time for those interested to outline what it's really like to have my treatments, before, during and after.

Before:
My IVIG treatments are every week on Sundays in my home with the same nurse (Maggie❤️) and usually last around 6-8 hours depending on a variety of factors.  Every 3 weeks on Wednesday the Home Health Care company calls me to set up a delivery of my IVIG supplies. This shipment has 4 weeks worth of medicine and supplies my nurse will need to administer it, such as IV start kits, fluids, tubing, saline flushes and alcohol. The IGG has to be refrigerated which pretty much takes up the entire top shelf of my refrigerator. I store the rest of my supplies in a waterproof storage container that I keep on top of the counter as out of the way as possible. The girls love when we get deliveries because boxes are the most fun toy ever and bonus... there’s sticky bubble wrap too!

On Friday and Saturday I have to drink a TON of water to ensure hydration for my veins and to keep side effects from the IVIG at a minimum.  Every Saturday evening, I clean up my main living room and prepare the supplies my nurse will need in the morning for my treatment. This includes my pump, my IV pole, saline, IV start kit, saline flush, tubing, alcohol and gauze. I also have to remove one weekly dose from the refrigerator and let it acclimate to room temperature overnight. I’m so used to this by now, it’s just part of our weekly routine.

During:
On Sundays I wake up at 6:30am, chug my water bottle and get into a hot shower to pump my veins up. Then I take my pre-med course of Benadryl (in case of allergic reactions) and Tylenol (to alleviate the headaches). I come downstairs and let my nurse in and get ready for my dreaded IV.  No matter how many times you get an IV, it’s never fun. It always hurts and it always sucks. My nurse is one of the sweetest people I know and I’m so lucky that she is so good at IVs. My veins from my previous treated pregnancies are basically non-existent. They’ve literally run for the hills or become agile little things and roll around to get away from the needle. The only ones I can use this time around are in my forearm or my elbow. As long as I’m hydrated, my nurse has been able to get my IV started on the first or second try. It really sucks when she thinks she has one and she’s moving it all around trying to see if it’s all the way in my vein or just superficially. Not gonna lie, that really hurts. Usually she gets a good flash of blood into the catheter and we are good to go.

Next I get hooked up to the hydration (saline bag) that has to be run on my IV pole. The higher the pole, the faster it goes into my vein so we usually put it up on a chair to try to get it go quickly. This hydration is KEY to alleviating the gnarly headaches that come with IVIG. I had to fight to get my hydration increased so that I could actually function on the days after my treatments and finally got it approved. During that time, my nurse transfers the IGG solution from the glass bottles into the bag that will be used with my pump. When the saline finishes, my nurse then connects my IV up to the pump and begins the IVIG. My rate slowly goes up until it gets to my max rate that we’ve worked up  to, which right now is 190. I need to get it up to at least 225, hopefully 250 by the time I have my double treatments so that it won't take 12-14 hours to complete.

During my infusion, I often sleep (thanks Benadryl) and watch tv with my nurse. We love HGTV, especially Love it or List it and Fixer Upper. I play with the girls and drink, drink, drink! My nurse has to stay with me the whole time just in case anything were to happen. She also takes my blood pressure a few times an hour to make sure I’m not having an adverse reaction. The girls love to help take my blood pressure and my nurse is so accommodating with them. I can usually feel my headache coming around 11am, so I try to eat something or re-up my Tylenol to get ahead of it.

There are sometimes when my pump screams (okay, beeps) at me the whole time about being occluded, or my vein blows and infiltrates and my IV has to be started again. Those times are the worst for me and can be so defeating. It actually happened during our gender reveal right when we were supposed to be leaving to go to the field to reveal and I kind of lost it. I always try my best for the girls sake to keep myself together and not cry when I’m discouraged or upset about the treatments but I couldn’t hold it in that time. It’s such a silly thing to get upset about, but sometimes the stress of it hits me all at once. I was super embarrassed that I cried and took a few minutes to get myself together.  After a few failed attempts, my IV was restarted and everything turned out wonderfully for our reveal.

After:

When the infusion is done, my nurse removes my IV (sometimes I get impatient and remove it myself), takes one last blood pressure and is on her way. I normally try my best to rest, which is hard when you have 3 kids who all want your attention.  I also try to keep up with my hydration and my Tylenol. I usually take my migraine medicine as well to try and get ahead of the impending headache. My side effects are usually at their worst Sunday night and subside through Wednesday. My migraine headache is the worst on Sunday but lingers through Tuesday most weeks. The body aches, belly issues, fatigue and joint pain usually peak on Monday and Tuesday and last through Wednesday. I pretty much bruise every week as well from the IV, which was attributed to my slight anemia and crappy veins. 

The side effects are definitely annoying and sometimes causes me to feel defeated or irritable because I just feel so crappy, but it’s my normal for now.  I’m used to it and so is my incredible husband. Even the girls understand, which breaks my heart sometimes.  They ask me “Mommy, are you feeling better today? Can you play with me? Do you want me to lay with you?” The mom guilt is real and most days I push through and over exert myself so that they don’t feel like Mommy is sick all the time. I don't want to miss anything and I want them to feel that Mommy will always be there for them. Before this quarantine, work was rough some weeks too but my support system there was absolutely the best and for that I’m so grateful. I’m hoping that this new online learning will work out for me with my treatments too, but we shall see.

I honestly could not do this without my amazing support system. I’m so grateful for my patient and loving husband, my sweet girls and my wonderful nurse. I also love and appreciate every one of my friends and family that has reached out to me, dropped off food or simply checked in on me. We are living in crazy times right now and I try my best to keep perspective that in the grand scheme of things what I’m going through is small. And what I’m going through will keep my sweet little babies alive and healthy. That’s what matters. I get to see them often due to the extra ultrasounds and it is so reassuring to see them growing and thriving. When they are kicking and rolling around, I feel a sense of peace also and thank God that they are doing well.  Seeing the faces of my beautiful Izzie, Kenzie and Hazel also helps to motivate me and keep my spirits up when I want to quit, because treatment works.  They are living proof. 

Thank you all for reading, supporting our journey and sending us so much love. We are forever grateful to each of you. ❤️