Month 2, Uff Da!

January 15th, 2019

The video below is best representation I can give you to accurately and honestly depict my response to 'How are you? How is Oz? How are things going"...

The last month has been a whirlwind and I'm seriously suffering from degenerative mommy brain (e.g. going to the grocery store for 2 items and returning with only 1 because I couldn't remember what the other item was....seriously, that happened) so no promises that I'll actually be able to recall all of the changes and updates that have occurred but here goes nothing!

• We had Oz's follow-up weight check shortly after my last post in which he had gained weight, so no additional action steps were discussed or pursued.
• Oz had baby acne and occasional rashes on his face since birth. While his doctor wasn't concerned with this, I decided to eliminate chocolate, eggs and citrus from my diet to see if there would be any improvement. Within a couple of days of eliminating these, Oz's face cleared up! I eliminated these for about 2 weeks and have since incorporated them back into my diet without Oz's skin negatively reacting so am guessing that he did indeed just grow out of his skin issues. 
• My days at home with Oz became more and more challenging as each day passed. Oz went from a super chill, 'easy' baby to one in which needed my full attention every minute. He would finally stop crying, fall asleep in my arms, but the second I would lay him down, he would wake crying and we'd start the process all over again. Perhaps the most frustrating part of this was that Oz would seem to switch back to the old Oz the second Derek would get home from work. I'm pretty sure Derek thought I was making things up to get out of being productive around the house all day. While I'm not a fan of doing laundry, I assure you I would much rather do laundry all day everyday instead of failing miserable at settling an unhappy baby for hours on end. 
• I have an irrational bitterness towards the Target Mom. You know, the mom who heads to Target to aimlessly walk the isles for some enjoyable and unnecessary shopping while her infant sleeps or chills silently allowing her to peacefully do this. This is what I envisioned for my maternity leave and yet just the thought of leaving the house and going in public with Oz wreaks havoc on my anxiety levels. 
• At about week 6, Oz went a handful of days and nights not sleeping more than short bouts here and there. Not only did he [and us] not sleep solidly during these days, but his awake time was 80% cranky and 20% content. And that guesstimate is on the optimistic side. 
• Our primary doctor was out of the office, but we did see a nurse practitioner during this time to determine whether or not there was a possible ear infection causing Oz's poor sleep and extreme fussiness. Thankfully, his ears looked good and his lungs sounded great, but this left us without a reason for the funk he seemed to be going through.
• I pushed the nurse practitioner to refer us to a GI specialist in Sioux Falls for further evaluation and testing. There had to be a reason behind Oz's pretty constant irritability and observable discomfort and I needed all possible options to be considered [e.g. aspiration, acid reflux, anatomical blockage].
• It was going to be about 2 weeks before we were going to get the appointment requested, so I also asked about getting an immediate prescription for acid reflux. We were put on a low dosage starting that day. 
• It has now been about 2 weeks since starting this medication and I can't say that I've noticed much of a difference in Oz's behavior. MAYBE a little. 
• Also at the time of starting the medication, we also started probiotic drops.
• Also at the time of starting the medication, we also found the most amazing pacifier in the world thanks to moms in my Cleft Mom Support group. The MAM 6 mo pacifier has been a Godsend in soothing Oz! He LOVES his pacifier which means we love it too! ...this could potentially back fire on us come surgery in a couple of weeks but right now it is our saving grace so we're willing to take the risk.

• Also at the time of starting the medication, Oz was working through the peak of colic according to the American Pregnancy Association. 
• Also at the time of starting the medication, Oz was hitting one of the first mental leaps.
• Fast forward 2 solid weeks since all of these changes took place, Oz's sleep and fussiness improved, but it's so hard to identify the attributing factor(s)! A very poor scientific study on our part with all of the changing variables!

Ok, so I said things have improved and I was just beginning to feel like we were crawling out of the trench when yesterday's appointment with the GI specialist happened...

• Oz had a remarkable drop in his growth curve, starting in 76% percentile in weight at birth down to the 6% percentile yesterday. I was heartbroken :( I believe she uttered the words 'failure to thrive' and clearly expressed her heavy concern about this and urgency in taking action. 
• In talking with the doctor about Oz, she suspects that he may have a dairy intolerance so requested that he be put on an amino acid based formula beginning immediately. If I would choose to continue to pump breastmilk during the next month of Oz being solely formula-fed, then I would need to go diary free in the potential case that he in fact is dairy intolerant. She explained the difficulty in doing so as everything has dairy (at least the most amazing things do) and so she encouraged I give it some time to consider what was going to be best for me before deciding. 
• Elecare is the formula identified and while no formula is cheap, this stuff must have flakes of gold in it at $40+ a canister.
• As much as I hate my pump at its requirement of me to be strapped to the thing for 8 days, 4 hours, 18 minutes and counting since Oz was born (thank you Pump Log app), I had a goal of committing to providing Oz with the liquid gold for at least 6 months. I felt like the doctor's recommendation yesterday took my goal, threw it to the ground, stomped on it and then ripped the fragmented pieces into shreds to make sure it was no longer a recognizable vision. A bit intense? Yes. A bit overdramatic? Yes, but...
• I have 1,500+ oz of stored breastmilk in a deep freezer we had to buy because we ran out of two refrigerator's freezer spaces. I will cry ugly tears if that diary infested breastmilk goes to waste in the end. 
• The primary goal is for Oz to grow and be healthy so if my breastmilk is not going to provide Oz that, then bring on the formula! But again, this isn't my preference.
• And the big reason for my dramatization of yesterday's appointment, going dairy free in my diet means cutting out some of my favorite of things to eat! Cheese? Nope! Pizza, our weekly staple? Nope! Baked goodies? Nope! I mean, COME ON!!!
• I know many people are dairy free and that's fine for them, but this is me and I have a deep love for diary. 
• I know that there are many studies showing that dairy is not good for you and while this may be true, these studies and their results have never prompted me to consider eliminating dairy before I now potentially have to. 
• We don't even know that Oz IS dairy intolerant, we are just doing this to see if there is any improvement in his temperament. 
1. So, if I quit pumping and it turns out that he is NOT dairy intolerant then there is no going back to pumping and providing breastmilk after the fact. 
2. So, if I go dairy free and it turns out that he is NOT dairy intolerant then I endured a challenging 4 weeks of eating semi-satisfying food options.
3. So, if I go dairy free and it turns out that he IS diary intolerant, then I can incorporate dairy-free breastmilk back into his system. 
• In the end, it's not about me. It seems as though the best option for Oz is for me to go dairy free this next month and wait to see about the possible intolerance. I will pray that no intolerance is found and I can enjoy a slice of cheese slathered pizza month from now. 
• The doctor also ordered Oz to get a swallow test and an upper GI test done yesterday for consideration of acid reflux and/or a physiological issue behind Oz's behavior and insufficient growth. Basically, the radiologist used x-rays to watch Oz's swallowing function and searched for indications of aspiration, reflux, or anything else that could interfere with him successfully eating or growing. Oz performed beautifully! Both the radiologist and speech-language pathologist were very impressed with how he performed and while there was a little reflux into his nose (to be expected with his cleft), there seemed to be more signs pointing to diet-based reasons for his behavior versus anything else. 
• So we are about 24 hours into 100% Elecare formula and I have ugly cried a ridiculous number of times in frustration with how things are going. Oz seems to despise the stuff and regardless of his hunger level, he is hardly eating. I think we MIGHT be at 15 oz in the last 24 hours, and that's probably a stretch. As if I wasn't freaked out enough at the 'failure to thrive' comment yesterday, this action plan doesn't seem to be helping us move in a different direction. And his high hunger level has to be a contributing factor to him being EXTREMELY fussy - I feel like we are back to where/when this all started :( 
• The doctor did say it would take anywhere from 3 days to 3 weeks to even notice a difference, if any, with the formula introduction. Ummmm, 3 days sounds like an unbearable stretch of time in knowing what the last 24 hours have been like. And now it could potentially be 3 weeks like this? For all of those of you who have offered your help or assistance however we might need you, please know that you are on deck!!!

A couple of upcoming changes! 

*I go back to work full-time on Monday. I have stupid high mom-guilt for being enthusiastic about the end of my maternity leave. I SHOULD be sad. I SHOULD want to spend more 1:1 time with my baby. I love Oz and it is the BEST THING IN THE WORLD to snuggle him up when he is content or cooing at me, but those moments are few and far between. Most of my days the last 4 weeks have consisted of day-long attempts to calm and soothe a very unhappy child who seems to be in pain. All I want to be able to do is make him happy and get rid of whatever is causing him so much angst but none of the million different things I have tried has helped and therefore, I'm feeling depleted and defeated. In addition, I love my job, my students and my work family and getting back to a routine that requires me to shower daily and have adult conversations is going to be a really good thing for my soul. 

*Oz has his lip and nose revision surgery on January 31st as long as he remains healthy and he doesn't drop anymore weight. As much as I am dreading the loss of his beautiful face the way it is right now, I am also very anxious for the surgery date to come and go as it'll be one of the first big hurdles to face in his journey and it'll be nice to successfully clear it and continue the trek. 

Thank you for your continued thoughts and prayers for Mr.Oz and us, we are so grateful for all of the love and support we continue to receive. Now, go and enjoy yourself a slice of pizza and have another one for me!