Progress!

Max had a follow-up appointment today at McKay-Dee. His eyes have corrected themselves and there is no longer any ROP. He will continue to have eye appointments every 6 months, but everything looks good!
He is 7 pounds 2 ounces and 20 inches long! Which means he has grown an inch and gained 12 ounces (in 10 days) since he left McKay-Dee. He has varied his oxygen needs from 1/8 liter (in the car) to 1/32 of a liter (if he is awake and active)
We are still fortifying breastmilk with iron supplements once per day, as well as using a special preemie fortifier in all his bottles and it seems to be working! (Thankfully, because it isn't fun to do!--makes me feel like a chemist haha!)

Our next big appointment will be August 6th at Primary Children's with the pediatric surgeon to decided what to do with the CCAM (keep waiting, I hope) as well as his hernia surgery.

3 months old today

I just love how everyone wants to come see Maximus now that he's home. I know he has been a fighter and a tough kiddo who has really survived a lot! I will never be able to thank everyone for their prayers and support, and so many people have been excited to come visit and meet him. Unfortunatly, Max isn't out of the woods just yet. He is, quite literally, under house arrest.

In the words of our pediatrician "Maximus is a micro-preemie, now 3 months old, with chronic lung disease of prematurity, Oxygen dependence, a CCAM--a lung tissue malformation, reflux disorder, and an inguinal hernia that will have to be surgically corrected. He is a very HIGH RISK infant and should not be in public....."

Which also means that the public can't come to him as well, a small cold can kill him. Even if you aren't sick yourself, you may have picked up germs at the grocery store, the gas station, church, or a million other places and while your immune system is strong enough to fight those germs off before you even know you have them, his is not. RSV season is coming and for a NICU baby like Max it is nightmarishly deadly, I hope and pray every day that it will be a very short season this year and that we qualify for Max to get the RSV injection every 28 days. I would much rather give him a shot every month, than have to go back to the hospital.

S and I both have to shower and/or change our clothes before holding him if we've been anywhere. E takes a bath as soon as she comes home, and we scrub her hands with a scrub brush frequently. My mom, who is willing to care for him while I am at work, also has to shower and changer her clothes before being with him.

Thankfully, this is not permanent. He will get better, he will get off the oxygen machine, he will recover from the CCAM, they can fix the hernia, and the bigger he gets the better his immune system and chronic lung disease of prematurity will be. He may have complications for a long time, or a short time we don't know yet, but in the meantime we will do everything we can to make sure he grows big enough and strong enough to meet anyone who wants to.



Thanks again for all the love, understanding, support, and prayers.

Sunday the NICU team confirmed that we would be taking him home.....'as long as everything continues to go well'
They always make sure to have a loophole!
Even though Max hadn't completely passed his eye exam, they decided he was safe to go on 'wall air' which means we can take him home. He will have an eye check-up again on Saturday and I am hoping there will be zero signs of ROP :)

Pretty nice Fathers Day present!

McKay-Dee does something called 'rooming-in' where Max and I stay in a room....alone...overnight. It can be longer if I ask, but at least one overnight. The nurses come to bring him a bottle and check him at least every 4 hours, other than that I'm on my own.
Because of insurance issues I ended up 'rooming in' on Monday night...barely by the skin of my teeth. We were supposed to have Max set up on the exact same monitors and oxygen that he would be coming home with, but the nurses took pity on me and just let me use the hospital stuff instead. Thankfully, oh so thankfully, did it all come together so that we could make it home on Tuesday afternoon.

Rooming in SUCKED. I almost cried a million times and it made me terrified to take him home. Completely and totally scared out of my pants. I don't even want to talk about it. haha!

We survived and slowly but surely everything fell into place to come home and pulled into the driveway around 2:30pm after waiting what felt like a million years. My heart was beating like a race-horse the whole way home. Thank heavens for S who knew exactly what to say and do to help me chill.

Everything was better once we were home, and our first night (and since then) home was a CAKEWALK compared to rooming in. (No joke, it was a terrible night there)

After 87 days....our baby is FINALLY home :)

A day in the life...

Of a NICU mom. Just so I never forget nor take things for granted.

6:00am : Roll out of bed and start my morning off with pumping and measuring out milk to take to the NICU

6:30am: Pull my hair in a messy ponytail as I rush around trying to get dressed. ready, and eat something for breakfast.

6:55am: Made it to the hospital in record time! It helps that S dropped me off so I wouldn't have to find a place to park. Head up the Main Entrance Elevator to the 4th floor. What is it about the 4th floor??

7:38am- Start my scrub in process. McKay-Dee is SERIOUS about their scrubbing in and the front desk watches you to make sure you fully scrub for 3 minutes. They provide one-time-use sponges with scrubbers on the others side along with a nail pick. I am SO glad they are willing to give us these scrubbers so that I can feel confident my hands (and everyone elses) are CLEAN. I will never forget the first time I scrubbed my hands for 3 minutes straight watching the clock tick down the seconds until I could see my baby. Three Minutes is a LONG time to scrub your hands while you are trying to maintain modesty wearing a hospital gown after having a baby :)

7:41am: Check in at the NICU front desk then squirt myself 3 squirts of hand sanitizer to rub from my elbows to my cuticules. Then walk down the LONGEST hallway in the world ;) Put on more hand sanitizer after opening the door and look up at Max's monitor as I walk to his bedspace. Then I uncover him and pick him up just because I CAN do that now.

7:44am: Max and I snuggle and visit while I wait for either his nurse or RT come give me the daily update.

8:15am: The RT comes to tell me the GREAT NEWS that Max at 80mL (about 2.5 ounces) by mouth at 5:00am. Whoa Buddy! That's the most he has ever eaten in one sitting before. She continues to update me on his vitals and blood levels, which are all great. They've added eyedrops to his cares twice a day to help with his tearducts. He is on Level 2 for going home, which is halfway there, and assures me that the 'lightswitch' didn't turn off while I was away.

8:25am: Max starts acting like he is hungry so the nurse makes me a bottle to give to him. I change his diaper, take his temperature, switch his SAT probe, and measure his belly while the bottle is warming up. Hungry was an understatment as he drank 50mL in no time. Thankfully, he didn't reflux while I was burping him and he kept all 50 mL down.

9:00am: Max and I sit and rock in the rocking chair until he falls asleep...okay maybe I rocked him for much longer than it took him to fall asleep.

9:45am: Put Max back in his bed and check myself out of the NICU.

9:52am: Call S and give him the updates of the day. S tells me he won't be stopping by at lunch time, but will meet me in the NICU when he gets off work.

10:10am: Fill out the NICU calendar for Max in the waiting room, they are testing to see if he will wake up on his own if he is hungry which is the next step in his eating Level. They monitor him closely, but do not touch him or anything else that could wake him.

11:00am: He did it! He woke himself up when he was hungry, the RT tells me. I scrub-in and check back into the NICU so that I can give him another bottle!

11:15am: He is all ready to give his bottle again! He eats 65 mL this time and burps almost right away. I live for days like this! We snuggle down again and the RT brings me a glass of ice water. McKay-Dee rocks.

12:30pm: Max and I rock in the rocking chair and I chat with the RT about his progress. She lets me know that if he continues to eat everything by mouth he might be going home sooner than I think. MUCH SOONER. He has graduated to Level 3 now already and they will continue to feed him as much as he wants whenever he wants to eat.  He has eaten 9 of his last 11 feedings from a bottle.

2:30pm SHIFT CHANGE for the the NICU meaning that it is closed to visitors. All visitors...and yes,  mom's count as visitors. I head down to the cafeteria to eat a late lunch and keep myself busy until shift change is over.

4:00pm : Max has officially gone 24 hours since he took a feeding through his tube. As long as he goes the rest of the day without needing it they will take it out. I watch him sleep so that I don't wake him, since they are wanting him to wake on his own again. I can hardly stand not being able to pick him up and hold him anytime I want, I'm not sure how I made it through the months of sitting by his bedside holding his hand through the incubator door. Time passes quickly and painfully slowly at the same time.

4:45pm: Daddy is here! Max wakes up when he hears his voice and starts sucking on his fingers. The nurses get a bottle ready for him and S gives Max feeding number 11 of 13. Dr. Sheffield comes in while Max is eating and lets us know tomorrow they are going to check his eyes. If he is fully vascularized then they are going to switch him to 'wall air'.....which means he could go home on Monday "MAYBE" he tells me several times. He asks us if we have everything set up to bring him home and if we have our carseat installed ...uh NO! OMG I didn't think he was going to be home until July. He asks us to please  bring our carseat tomorrow for the "Carseat test"

5:30pm...S and I both look at each other and I start to panic a bit, because we haven't even taken the carseat out of the box, none of his clothes are washed, and we haven't been grocery shopping in forever (mostly because I eat so many meals in the cafeteria or in the car...gee why haven't I lost any weight? ha!) We decide not to tell anyone because that big fat MAYBE is still heavy in my mind.

5:40pm Even though I usually stay until 9pm, I realize how much we have to get done to bring Max home and decide we better go.

6:38pm I start pulling the carseat out of the box at home

6:55pm We hit the Wendy's drive-throu before heading to Walmart for Clorox wipes, spray bottles, dish soap, and various other  houshold supplies

11:00pm We finally crash into bed after rearanging our room to get the basinett arranged and cloroxing/lysol spraying almost everything.

Whew!

The Lightswitch

Max continued to do well his first week back at McKayDee eating most of his food by mouth, Thursday June 14th the nurses and Respiratory Therapist decided the 'lightswitch' had turned on and Max was eating almost everything by mouth. He had ONE feeding in his feeding tube in the middle of the night (early Friday morning). He has made so much PROGRESS! and I absolutely LOVE being able to feed him instead of standing by while a nurse hooks him up to a machine that feeds him.

McKay-Dee

Monday afternoon the PCMC NICU NNP (Ha!) Translation: Primary Childrens Neonatal Intensive Care Unit Neonate Nurse Practitioner. Anyway, she told me they had several babies being admitted, and since we had requested a transfer we were first on the list to move due to them needing beds for the incoming babies. She told me the Life Flight team was ready to move him once they got my consent. I had a minor panic attack until she reminded me that the team who moves individuals to and from PCMC is called the Life Flight and he was going to be transferred by ambulance. He did amazing during the transfer and slept the whole time. It was so nice to be back at McKay-Dee and Dr. Schaffer even jokingly told us 'Welcome Home' He was in a different room than he was originally, which was nice because it was in a section with no other babies. Solomon and I took turns holding and talking to him when he was awake.





Tuesday they ran some tests and decided they wanted to continue with the 'darby' as his hematocrit was at a 30. They also decided to discontinue his sodium and iron levels to see how he would do. It was so nice to be able to sit and hold him for hours without so many people coming in and out all the time. OTPT did her assessment and decided it was time to try and see how he would do eating on his own, and Solomon was even able to join us. Max was able to latch, suck, and swallow for several minutes while remembering to breathe. He would suck and swallow a few times, then stop and breath--almost like he was panting- then suck and swallow again. Even when he choked he didn't dsat like he had been doing before, and went right back at it until he got the hiccups. Wednesday they moved him back to his original bedspace and it was the strangest deja-vu feeling to walk in the room. The feeling passes quickly though, as he is the only baby in a bed instead of incubator. I want to walk around to all the mom's and hug them.





Since then Max's has continued to improve by leaps! His oxygen has gone from 2 liters/minute to 0.2 liters/minute as of today. He has done both nursing and bottle feedings and doing better and better each time. Today I started nursing him, and then shift change (I HATE shift change) began so I had to leave, the nurse noticed he was still trying to eat and sucking on his blanket so she gave him a bottle and HE FINISHED IT!!!!





Primary Childrens is a phenomenal place to be, and I will forever be in-debt to them for literally saving my son's life. I know there is no possible way for me to Thank everyone who we worked with and who took care of Max.

However, McKay-Dee has made my heart lighter and they are a wonderful hospital as well. I've experienced them before (with S who had surgery a year ago) and have nothing but good things to say about them. We are so close to coming home I can almost feel it! I'm still hoping for a June date to come home, but it may be July and I have made peace with that.





He is weighing in at 5lbs and 13.8 oz tonight and still doing great at 0.2 liters of oxygen, I'm hoping he comes home without oxygen support, but I'm not holding my breath, and I'm trying to prepare for it. He has improved so dramatically the last 6 days that I can't wait to see what he does next week.





Again, I cannot express my gratitude enough for all the prayers, concern, love, kindness, generosity, and support we have received from everyone. Thank you from the very bottom of my heart.

Our Million Dollar Max ;)

Max is continuing to do well and is growing. Tonight he weighed 5 pounds 9 oz  and was 17 3/4 inches long. He is continuing to work on eating, and on Friday we took turns dipping a binkie in milk, and putting it in his mouth so he becomes excited and familiar with the positives of eating by mouth. I can imagine it being quite scary for him when he chokes so we are trying to make eating as positive as possible.  OTPT has continued to work on him eating from a bottle, though he never eats more than a few ml at a time he is doing so well at it. He is showing signs of wanting to eat, and is actually quite aggressive with getting it into his mouth, (OTPT jokes it reminds her of a shark attack!) once he gets it into his mouth he struggles to remember to swallow and/or breathe.
He has recently begun to have a hard time with reflux, and they weren't sure if it was because of one of his medications, or if it was legit reflux so they have discontinued his medication to try. The medication they were giving him was a stimulant to help his body remember to breathe on its own. Ah...the circle of it all. :)
Sort of like the circle of his high-flow cannula. The CCAM means he has a significantly lower lung capacity on his right side, so he needs a HFNC (high-flow nasal cannula), HFNC means he can't eat on his own (the nurse explained it like running up several sets of stairs and then trying to drink a glass of water--yikes!) BUT the more he eats, the bigger he gets and the bigger he gets, the less oxygen he needs (because the bigger his lungs, the less the CCAM impacts his lung) and the less he needs the HFNC.

All things considered Max is doing amazingly well and we actually sent in a request he be transferred back to McKay-Dee. Everyone has signed off on the transfer so far except our insurance. We are really hoping they will sign off on it tomorrow and he can move back to McKay-Dee this week. The fact that the MD, NNP, and surgeon all feel like he is stable enough to move to a lower Level IV NICU makes me so very happy. It would truly be so great to have him within a 40 minute drive, instead of an hour and 40 minutes. We will both be able to spend so much more time with him, and I will even be able to spend a few nights there. Another, less important detail is that we won't be spending so much on gas, as I can honestly say I have never been so poor in my life.

 I try not to look at our bills yet, as so far Max has racked up about 5 houses worth thus far. We have begun to call him 'Million Dollar Max' and with his surgery he may end up going over that amount. Thankfully we have insurance, so we don't actually have to PAY that much. It will be a nice nickname for him, and oh the stories he can tell. I'm pretty sure he will kick butt at the 'Two Truths and a Lie game' when he grows up! :)

I again am so grateful for the prayers, the kindness, the support, and the love we have felt from everyone. I look around at the NICU and am grateful for how well he is doing and all the health problems and complications he doesn't have, and I truly believe it is because of all the support we have gotten from everyone. I know he wouldn't be doing as well as he is, and be stable enough to move closer to home without it.