Weeks 35 & 36- Happy Two Months Ari!- Weeks 7 & 8 NICU

Let me start off by apologizing to my loyal readers for leaving you hanging for a week, however once you get through this post you may realize why I’ve been MIA.

We’ve reached some major milestones in Ari’s little life that are worth celebrating:

*Ari is officially two months old (tomorrow!). I know, almost unbelievable right? While it saddens me greatly that the first two months of this little man’s life have been spent within the confines of two NICUs, I know that they are providing the next best home (next to my belly) for him so I really can’t complaint too much.

*In case you’re doing the math this also means we have spent over 50 days in hospital so far. If you include the day I was admitted to Sunnybrook for ruptured membranes, it has been 60 days! Again, not something I’m ecstatic about, but I’m trying to look on the bright side of things here.

*Pounds gained, all SIX of them (by Ari, in case you were wondering)!

*Discharge talk. No, a date has not been set, nor will anyone give us anything more than a very rough ballpark figure. However, going from a world where discharge was so far away that it was never mentioned, this is a big step.

See what I mean, big milestones here. However, these milestones did not appear on their own, they are the product of many highs and lows over the past two weeks:

Weight- Ok seriously Ari slow down a bit, you’re already starting to look too big and you’re freaking mommy out! Never in my wildest dreams did 8-weeks-ago me think I’d be saying these words so soon but here we are. Our little Buddha belly is tipping the scales at 6lbs 5oz now- isn’t that incredible?! These are the moments where for just a second I hate my pump just a little less. Ok, back to hating it.

Can you believe how big he’s gotten?!

Side note: Ari’s weight gain has slowed down a bit- read more about this in the breastfeeding section. 

Pumping- Going there already huh? It is what it is, and the good news is that it is slowly being replaced by the new guy in town- breastfeeding!

Breastfeeding- Yes, it’s true, this not-so-little man is now completing some oral feeds (as opposed to the NG tube feeds)!! This is very exciting as he has been dabbling in the field for some time, but just recently took an active interest. I was told long ago that it would be like this, as if one day after many attempts at it, he would just have the desire and not turn back. As you know for some time now I had been putting him to breast for what they call NNS (non-nutritive sucking), basically some practice exercises prior to a tube feed. Then, with the assistance of a nipple shield (though it sounds like a prop from the Game of Thrones, it is in fact something that is used typically in those suffering from inverted or flat nipples, OR as in my case, a NICU cheat that allows breastfeeding to start sooner because it eases the flow of milk letdown).

Happy boy after successfully nursing the first day

The more Ari breastfeeds and relies less on his NG tube feeds, the closer we are to going home. As you can imagine, this requires me to be at the hospital, a lot. like a ton. Here’s what my daily schedule currently looks like:

3am- Wake up to Pump
6am- Wake up to Pump; Shower and get ready for the day
8am- Take Isla to school and head to the hospital
8:30am- Start Ari’s handle: Check temperature and change his diaper
9am- Breastfeed
11:30am- Start Ari’s handle
12pm- Breasfeed
2:30pm- Start Ari’s handle
3pm-Breastfeed
4pm- Leave hospital to pick up Isla from school with Payam
4-8pm- Quality time with Isla including a fun activity like the park or library and dinner before bedtime routine
6pm- Pump
8:00pm- Head back to the hospital to start Ari’s handle; Bath time every other day
9pm- Breastfeed
10pm- Head home
12am-Pump

In between some of those breastfeeds I either go home or try to do some sort of activity or errand to break up the monotony of the hospital.

Does this clear up the issue of my being MIA for the last little while? I feel like a spinning top most days. The one thing that keeps me going (other than my incredible husband who does whatever he can to support me) is the idea that everything I am doing is getting us one step closer to breaking free from the NICU.  Until you’ve lived this life, you have no idea how long every day feels and how slowly time passes or how small your world becomes. The other day I found myself telling Payam a story about finding a parking spot that morning and stopped myself, realizing what it just might feel like to lose your mind.

You may be wondering, why don’t I just breastfeed Ari for every one of his feeds? With a preemie there is a fine line between the calories earned from the breastmilk vs. the calories burned trying to physically breastfeed. In fact, since starting the breastfeeds, Ari has dropped down to a gain of about 10g per day vs. 60g per day on only NG tube feeds. Just last night, he actually lost the 9g he had gained the day before. Therefore, I have been warned of the next possible yo-yo in our future- the breastfeed vs. NG tube trade off. Obviously I’ll do whatever is best for Ari, regardless if it means yet another week in the NICU.

Reflux- Still totally an issue. Ari is still on the Ranitidine and it seems to help a little. The doctor has also ordered him to be on Bio Gaia drops, basically a probiotic drop available over-the-counter to try and help him digest better. Ari suffers from a lot of gas, which unfortunately disturbs his sleep. Lost sleep= burnt calories= weight loss, which he cannot afford to have happen therefore we are hoping that these drops help him out. He will most likely still be on the Ranitidine upon discharge from hospital and onward until his paediatrician decides to try him off of it.

Breathing- Silence is golden. Ari seems to have regulated his breathing and heart rates to the point that days have gone by since I’ve heard his bells chime. This is excellent news since it is one of the three major goals that needs to be attained before discharge (the others: weight gain and all oral feeds).

Of course, this too can turn out to be another game of yo-yo. Ari’s cot is currently elevated to assist with his reflux and digestion. Prior to discharge he will be laid flat to simulate what his home bed will be like. This can often result in increased reflux, which of course is one of the culprits for desaturations. Another reason he may experience some desaturation issues is during his car seat test- more to come on this in the future.

Photos- Thanks to another resourceful mom in the NICU I was introduced to the Tiny Footprints Project. The basis is this: A prior NICU mom wanted to create a way for parents to capture these moments in their child’s journey in the most stress-free way possible. Participation is free and after a simple online application you are teamed up with a volunteer photographer from your area who will arrange a time to come and shoot you and your baby in the NICU. Incredible right? There is no catch, unless you consider allowing both the photographer and the TFP to use your images in their own promotions a catch. Just two days after applying to TFP photographer Megan Battersby was in the NICU to capture our experience on film. I only wish I had thought about it sooner to have a photographer come into the NICU at Sunnybrook, it would have been neat to have those very first days shot by someone who actually knows what they’re doing, instead of me behind the lens (usually of my iPhone)!

TMI Update- I’ll keep this short and sweet because I know you’ve all heard too much about my nether regions! As predicted by my OB, the bleeding spontaneously stopped around the 7-week postpartum mark. Another huge milestone, though one I’ll chose to celebrate quietly so that Ari can have the spotlight.

If I could sum up the last two weeks in one word it would be: chaos. Both emotionally and physically I am done. Attempting to maintain the routine I do for Ari while also being there as much as possible for Isla and keeping some semblance of a home has helped me reach my max. I liken the feeling to caregiver burnout, and having been through it before I can tell how close I am to that point. The good news is that the end of life in the NICU may be closer than I thought.

In closing, I just want to say thanks to the incredible friends and family who have looked out for us, who have offered to help however they can, who have sent parcels, flowers, food, and love our way and who continue to boost our spirits. Also, to Ari’s other moms, the amazing nurses at the NICU who truly our best interests in mind. In fact, look at this amazing card I found waiting at Ari’s bedside as I whisked in on Mother’s Day to feed him:

As strong as I had been that day, and Mother’s Day is definitely not my favourite day, this card brought me to tears. It is so nice to have the support of all these wonderful women, many of them mothers themselves, who truly know what life in the NICU is like. Finally, I am a firm believer that I would not have gotten this far with as much strength, courage, or optimism without Payam’s support. He’s been there for me from day one (that’s over 10 years ago!) and has always picked me up, dusted me off, and gotten me back on the right track and for that I am eternally grateful.

Stay tuned as things are literally unfolding and changing as I write this. Some very exciting news may be on the way!