Fritz and I went to his Neurology appointment on August 29th. We met with Dr. Bieber. Adam was, unfortunately, unable to attend, because he runs his own Ortho clinic during that time. He is growing fantastically 60% for weight and 70% for height (he was in the 10-15% range when he was born). His muscle tone looks fantastic and he is hitting all his milestones right on time. His head has also stopped jumping in growth and is now following a nice curve!
Going to these appointments have a physical effect on me. I honestly just start dripping sweat (TMI, I know) and get so nervous. Even though I knew everything was going to be okay, there is always so much new information to take in and even more, decisions to make, we are always given so many options to think about.
While we knew that Fritz didn't have Hydrocephalus as they thought he might due to rapid head growth, we also learned that he was completely misdiagnosed while in utero and when he was in the ISCN, and at each follow-up ultrasound. I'm so glad we did the MRI because we found out what was being screened on the ultrasounds wasn't extra space at all, but a really huge Arachnoid Cyst. We knew the cyst was there, after the MRI, just not ow LARGE it was. While it sounds scary by definition we truly do not have to be too worried, and for that we are thankful. In all honesty, Dr. Bieber told us to consider this a win. Taking Dandy-Walker and Mega Cisterna Magna off the table should be a relief. We aren't 100% in the clear, but our boy is 99.9% perfect and we shouldn't expect any developmental delays or dissabilities.
"In most cases, arachnoid cysts are present at birth (congenital), but usually, do not cause any symptoms (asymptomatic) throughout an individual’s life." (NORD)
Fritz does have extra fluid around his brain, largely due to his head size, 99.93% (oh man), and his ventricles do look a little a little enlarged (likely from the cyst keeping fluid from draining as quickly as it could or should).
We will have a neuro follow-up when Fritz is a year old. At that time we will decide if we want to have the cyst drained and when it would be appropriate to do so. Our team is against putting a shunt in, due to the risk of infection and that was a huge relief. There is a procedure called Endoscopic cyst fenestration where the cyst can be easily drained without opening the skull or inserting a shunt. I asked our nureologist if there was any sense of urgency to get a neurosurgey consult and his answer "nope!".
Right now Adam and I are so thankful to be able to focus on our healthy and happy baby. We are one step closer to being able to formally close the door on this chapter and it is a relief.
Baby boy clothing was something that intimidated me from the moment we found out our little bug was a boy. I grew up with sisters in a world of stealing shirts and mascara. I had no clue what to do with a tiny little human that would roll around in the mud and play with worms (ohhhh god).
Adam and I both like quality clothing, so it was tough for me to not spend ALL of the money on baby clothes for Fritz. The issue with buying clothes for a baby: they need a new wardrobe every three-ish months. There are certain special occasions that call for a special outfit but for everyday wear, it just doesn't need to cost a fortune. This is what works for us and our family! No judgment if you spend $100 on an outfit or $1. Personally, I think we dress Fritz pretty darn cute and not at the expense of his college fund.
Above is a typical Fritz outfit: Old Navy Pants, Granamals T-Shirt, Little Unicorn Bib and Freshly Picked moccasins!
Old Navy: I go here for easy separates like a chambray shirt, striped drop crotch pants and onesies. Everything is usually under $10 and that makes me happy and I'm not gutted if it gets ruined or he outgrows it super quickly. However, everything alway goes on sale and quickly - so what to buy what you until its majorly discounted!
Gap: We have a bunch of summer outfits from here all in 3-6 month. I will say Baby Gap runs B I G. But Fritz is almost able to fit into a 6-12. They are having a great sale right now where nearly everything is 50% + and extra 20%. I ordered him two little pairs of camo joggers and some long sleeve henly onesies. Again, nothing really over $10-$20 here. Last summer I shopped their sale rack for 6-12 month fall sweaters which will be perfect for the next few months!
H & M: I just picked him up some sweatshirts and pants for fall. He is growing out of his 3-6 month summer clothes at a rapid rate. H & M does tend to run a little weird their 4-6 month clothes were small and their 6-9 month clothes were H U G E. I also really think you need to see their stuff in person. The quality varies.
Burt's Bees: Love their shortalls for daycare. Very affordable and wash really well. Bonus: Amazon Prime.
Target: I'm sort of particular here. I like their Cat & Jack line for pants and shorts. Their Cloud Island Kimono onesies and the Afton Street brand, which is a little more on the "cool baby" side of things. I'm not really into the dress your baby up like a dino or make him wear frogs head to toe *and before you judge me, remember I grew him. He's my human doll. I can dress him in whatever I like. (JK.)
TJ MAXX: Our TJ MAXX is like a baby heaven. They have Aiden and Anais, Little Unicorn, Vineyard Vines - - - all of the things for like $7.99 a pop. So, when I have time to dig, I go there! I have a feeling he will reject my preppy/hipster baby vibes sooner than later and demand to wear all Under Armor and Nike and in that case, its coming from TJ MAXX as well.
Zara: Usually I have such a hard time ordering online for Fritz from Zara, but placed an order this morning and am thrilled with what I got! Some cute henleys, pocket t-shirts, harem pants and the prices were amazing. Here is a small clip of my order.
Florence Eiseman: This is a Milwaukee based brand that I wore when I was a baby, as did my two sisters, but its incredibly expensive. My mom picked up Fritz a bunch of pieces and while they aren't his everyday style, he looks so cute in them! I can't wait to see him in these for Christmas with a little white oxford.
*Yes, Fritz has velvet Christmas overalls.
Beaufort Bonnet Company: Again, these are special occasion outfits. We do not need to spend $60+ on a Jon Jon for him to spit up on all day. That being said, his Gigi did think he needed a special one for the Fourth of July in San Diego and the quality is really lovely.
SK Creations: I LOVE their stuff. The most incredible monogramming and the softest fabric. If you check out the Etsy store, you might recognize a little model on there! SK Creations made Fritz's coming home outfit and another shortall that he lived in this summer. These are more than I usually spend on everyday outfits, but $20 for a MONOGRAMMED romper is priced so well!
We went in at 38 weeks and three days to have an ultrasound done, specifically, of Fritz's brain. They wanted to see if the space they noticed 10 weeks earlier hard grown and if there were any other visible issues. Said space had grown, but Fritz looked perfectly healthy otherwise. "A moving baby is a happy baby," our doctor would say over and over.
Immediately after I had a checkup with my OB. Adam and I had gone to triage a few days earlier when I woke up for work and noticed a lack of fetal movement. The resident noticed I had low fluid, but all looked great in the ultrasound. Aside from Fritz's Mega Cisterna Magna, we went to the appointment pretty happy.
It was routine, they took my BP, which had been high at three out of 20+ prenatal appointments. Out came, "OH F***", " at the poor nurse, which is when we all knew they would be sending me over to triage to be monitored. Adam and I both thought maybe it was a fluke. My BP had been high the week before due to stress, but I got it down by doing breathing exercises. I swear by this: six breaths in - hold six breaths - six breaths out (works miracles). Instead of monitoring me for the standard three hours, they waited about thirty minutes to tell me I was going to be induced.
When anyone asked me my birth plan, I: 1. was convinced I would have a c-section 2. didn't care how the baby got out as long as the baby and I were both healthy. 3. really did NOT want to be induced. 4. was VERY concerned about screaming and pushing (like in the movies). 5. planned on having my hospital bag with me when I was checked in - - - ha.
After being induced on Tuesday, we met our beautiful boy on the evening of Thursday, January 25th.
Fritz was deemed a "stunned baby". He just wasn't quite ready to be in this world, but Adam and I were in awe. He was perfect, even if he didn't want to meet us right then and there. We were so smitten, so in love, he was here, finally. Fritz had the sweetest round face, almond eyes like mine, and a tiny bit of dark hair. He had two dimples and a sweet dimpled chin. He was the tiniest thing I had ever seen. I couldn't believe he was ours, to keep, forever.
A few hours passed and we had a very lethargic baby with us in our recovery room. Adam's mom and dad came to meet Fritz and he didn't make a peep. This seemed normal to me, he was just chill. One of the nurses decided to test his blood sugar, not something that was routine, and it was alarming how low it was. Fritz was admitted into the Special Care Nursery at Mayo Clinic (a step down from the NICU) and one of the most special places I've ever been. He was hooked up to an IV with the equivalent of sugar water and was tested every few hours to make sure he was on the mend (this is pretty standard). I will never forget the nurses sticking his tiny feet and being so unhappy with his IV placement. They hated the new "prickers" that Mayo had ordered and poor Fritter kept bleeding and bleeding. These nurses cared so much, I think about them every day.
We also learned that Fritz's bilirubin was also super high, something that can happen if the baby sustains 's bruising during the birthing process, due to let's just say...pushing (again, this is pretty standard and happens all the time). This was a punch in the gut. We thought we could maybe take him home on Saturday or Sunday, but he needed to be under lights for 72-hours at a minimum and then they would test him again. If his levels didn't improve, it meant we had six more days in the hospital. Searching for any positivity we could find, Fritz loved the lights and the goggles. Apparently, this is rare, so GO FRITZ! We called him bug when he was first born for a reason.
While we were in the Special Care Nursery, we could also work on getting some more answers about this sweet babe's noggin.
They did an Ultrasound of Fritz's head and sat me down later that day with the results, Adam had run over to the gym and I told him to come back. What they found were enlarged ventricles, mega cisterna magna and some plexus cysts on his cord. All separate are usually benign, but together meant that we could be looking at other significant health issues - they were worried about his kidneys, lungs, and heart now. The team thought that since they were seeing these issues in his brain, that surely something else had to show up in another part of his body. Typically these kinds of diagnoses don't come alone and are followed by other issues.
The next recommendation was a full genetic workup, which was done when we were in the hospital and a consult with Neurology after we were discharged later the next week.
Mostly, it was a waiting game, until Fritz was four weeks.
Neurology ordered an MRI (tubed and sedated) for our one-month-old baby. Adam and I weren't quite ready to put our four-week-old under anesthesia, so we meet with Dr. B instead to see if they could look him over first and see what we saw - a thriving little boy.
At four weeks old Fritz had his first Neurology appointment. It is here that we found out his genetic panel came back perfect and that his head was in the 99.9% range. His muscle tone looked great which was a good indicator that Dandy-Walker might be off the table, but the growth rate of his head was concerning. At four weeks old we couldn't really establish indicators of a developmental delay. Neurology said we could put off the MRI, but ordered another Ultrasound and monthly head measures.
Adam and I were still in a gray area here. We were crushed because in front of us was this perfect baby. He looked perfect, smelled perfect, acted perfect, but we were being told over and over and over again that he was far from it. On top of that we were also getting mixed messages.
At the end of our first neurology appointment, the consultant came into the room and spoke the kindest words that would carry us through the next five months, "Sometimes we make a big deal out of nothing and I hope that is what we are doing here. Sometimes you just have to look at a baby and say, my my, that is one beautiful baby. Your baby will be fine."
The next few months looked like this: well-child exam, head measure, his head grows, doctor's freak out. I would freak out that his head is growing at an alarming rate and that he did have hydrocephalus and I was just missing it. I checked his soft spot for pulsing every hour - maybe more. When our doctors would order an ultrasound, the ultrasound looked good - over and over and over. His head was big, his ventricles shrunk (this was a huge relief as when they are enlarged is a sign of hydrocephalus) and the cysts on his cord did not increase in size.
At about five months they finally said we could do a non-sedated MRI to get a good look at the back of Fritz's brain. The week leading up to his MRI was undoubtedly the toughest of my life. I was hit out of the blue with crippling PPD and Anxiety. ***Right now, I'm taking it day by day, but do feel much better, thanks to the miracle of modern medicine and a husband who was able to get me into the doctor ASAP.
Fritz's MRI was on a Tuesday. Adam was able to leave the OR to support me as we put our baby in a giant white tube. Surprise: one of us had to go in with him. I volunteered and held down my sweet, screaming Fritter for what felt like an eternity. They got all of the photos they needed and again, we waited.
As I pulled in our driveway after picking Fritz up from daycare on Wednesday my phone rang with a Mayo Clinic number is was Dr. B.
It must has been fate because as I opened the garage door Adam was standing on the stairs in the garage, I think he was taking the recycling out. I made hand gestures, like "ITS THE CALL!!!!" and he just sort of stared at me until I started literally fist pumping for joy. It was good news, great news, the best news I've ever gotten in my entire life. Fritz had: macrocephaly ( a big head) and a benign arachnoid cyst. This is a common type of cyst, in fact, people we know (really smart and successful) people have them (ha!).
Our Fritz hasn't mastered sitting up yet, but his head is H U G E. And for the record Adam and I both aren't on the adult growth curve for our heads either, we also have H U G E heads.
Our next Neurology appointment is on August 29th! We are expecting good news. We don't take for granted that we have access to some of the best medical care in the world here in Rochester. I also know, that our story, unlike many others ends happily. For that we are so fortunate and not a day goes by that we don't acknowledge it.
Ok, don't judge me here. Does your baby spit up and drool a lot? Do you go through six outfits a day? Then get these shirts. I picked up the short sleeve pocket t-shirts in every color at Wal-mart for $3.88 a pop. They look cute, are soft, and go through endless washing cycles like a dream. I am going to pick up the long sleeve shirts for fall in every color as well. Garanimals for the win. There is no reason your baby can't be dressed in high-low: They look adorable with Freshly Picked mocs, Zara pants, and a Copper Pearl scarf.
*The pocket t-shirt online is sold out in most sizes. So check your local store, trust me on this one. Swallow your pride!
These Matimati burp cloths are huge. They are thick and extremely absorbent. It also helps that they come in cute patterns. We have a spitty baby, so I bring one everywhere. It is $21.95 for a set of five, but well worth it. They wash well and hold all of the milk (literally all of it). Best part - you can Amazon Prime them!
Trying to get a wiggling 18-pound baby is stressful enough. Trying to match a bib to their outfit, not going to happen. I think the Copper Pearl printed bandanas are adorable - we have a few - but this solid pack makes it so easy to get Fritter ready in the morning. I eventually want to get them monogrammed. Another Amazon Prime find!
I didn't know such a thing existed before my friends started having babies. Wet Bags have saved me from ruining the insides of literally every bag and backpack we own. I have one for his daycare backpack and one for my Fawn Diaper Bag (which I love, BTW). I personally like this Bumkins brand, we also use their bibs too.
Again, with the drool and slobber, come teeth. Fritz hasn't had any come through yet, but it is looking like we might see his two bottom ones any day now. Sophie, is his BFF, constantly in our around is mouth at all times he is awake. I know you've heard horror stories about Sophie being filled with mold, we will cross that bridge when we get to it. He has only been chomping her ear off for about two months, so I'm not worried yet!
These are the products we use nearly every day. We also are huge fans of the Wubanub and Doctor Brown's Bottles.
* Update: We ended up ordering the Asunflower highchair and LOVE it. It goes so well with our decor and is comfy for Fritz and easy to clean! It is still on MAJOR SALE for under $200!!