Amii, owner of Up on the Hill (UOTH), has been my friend since about 1993. She opened UOTH in 2012 when her husband lost his job after their second child was born.
She was surprised to find out they were expecting their third child in mid-April 2015. Unfortunately, baby boy Fritz arrived this morning, January 2, 2015 at 1 lb, 9 oz.
Amii is one of my few close friends and I can’t just stand here, I have to do something!
I set up a GoFundMe for Amii and her family where I will post updates as Amii has them. All funds raised will go to the family to pay day to day expenses. I’d love if Amii was able to hire more help to keep her store running as well. Up On the Hill is my local cloth diaper shop and the first I ever set foot in!
Please share the GoFund me if you aren’t able to contribute. Thank you for your support!
Edit: First I want to say thank you from the bottom of my heart for all the support. Second I want to apologize if the above was abrupt or unclear. I wrote it quickly while still reeling from the news. Lastly, I want to mention that while I asked Amii’s permission before doing this, she didn’t ask for help. This was my idea. UOTH is an extremely small store and it isn’t exactly bringing in big bucks. It is the main source of income for the Fritz family and while they have two part time employees, (like many small businesses) Amii is the one in the store the majority of the time. This is why I mentioned above the idea of being able to have someone else in the store while she’s unable to be there. It’s not uncommon to have days where sales don’t cover the cost of part time employees and being a new store, profits are far from large. I’m trying to let the optimist in me overrule the part of me that is hurt by the few negative comments I’ve seen. Thank you again for the thoughts, prayers and support.
Edit 2: Baby Fritz has a name! Oliver Garnet Fritz. If they make it one week without a brain bleed they will be able to hold their little boy for the first time and practice kangaroo care. That is the big goal right now!
Edit 3: 1/4/15 – Oliver received colostrum in a feeding tube this morning! He is at risk for meningitis because his birth was too fast for the antibiotics (group B strep) to take effect. So far he looks OK. Amii is pumping every 2 hours and is understandably exhausted, but hanging in there!
Many people have asked for Amii’s address to send cards, well wishes etc. You may mail/ship items to:
Up On the Hill
121 West German St Unit 1
PO Box 1769
Shepherdstown, WV 25443
Please note: USPS mail & packages can only be sent to the PO Box. UPS & Fed Ex items go to the street address.
Edit 4: 1/5/15 – Oliver is working on opening his eyes!
Edit 5: 1/6/15 Amii was able to kangaroo Oliver for the first time!
Edit 6: 1/7/15 – Oliver has been extubated & is on a
CPAP SiPAP (a step down from the ventilator). Fingers crossed he can remain using just the CPAP SiPAP!
Edit 7: 1/8/15 – Oliver snuggled with Daddy today and Mom & Dad heard Oliver cry for the first time without being intubated. No one wants to hear their baby cry but it was a nice change.
I made a mistake yesterday – Oliver isn’t on a CPAP (pressure only) it is a SiPAP (provides breaths). Still a great improvement!
Edit 8: 1/9/15 – Good news/bad news
Oliver is 1 week old and 1 lb 11 oz today. His PDA (Patent Ductus Arteriosus) is now almost closed (good news) and they are attempting to back the siPAP from 20 to 10 breaths later today. (Also good news.)
The bad news is that a brain scan today showed a very small hemorrhage that increases his risk for developmental delays, but at this point it only requires monitoring.
Overall, the doctor is “pleased as punch” with his progress!
Edit 9: 1/10/15
Oliver is on the CPAP today – he kept breathing against the SiPap so he took a huge step to the CPAP which just provides pressure & oxygen, so he is breathing on his own!! Daddy also changed his first diaper today!
Edit 10: 1/12/15
Oliver hasn’t had a great day. Yesterday he had to be moved back onto the SiPAP from the CPAP. His bloodwork and “spells” indicated he wasn’t quite ready for the switch. He can tire easily, and it’s a lot of hard work remembering to take breaths at his gestation. Amii is very thankful he didn’t need to be reintubated – he was very close to that.
Today he’s having too much trouble for kangaroo care. They had to increase the O2 and pressure on the SiPAP and his oxygen levels have been dropping in any position but his tummy.
Amii brought a Sarah’s Silk for him to snuggle (the texture is similar to the inside of the womb) & held it against her for the ride so it has her scent to comfort Oliver. While this really isn’t the news I wanted to share today, I’m remaining optimistic that this is just a minor setback!
Mini update: Oliver was able to tolerate a short kangaroo care session today but he did have to be re-intubated. He is worn out trying to breathe and needs some rest.
Edit 11: 1/13/15
Oliver is very tired and a bit lethargic. He is on the ventilator but still having some desats and his blood gas isn’t great. His premature lungs are simply too immature at this point and there wasn’t enough time for the steroid shot to take effect before his birth. Infant Respiratory Distress Syndrome is serious but Oliver isn’t critical right now. With preemies, that can change in an instant so the Fritz family could use your positive thoughts.
Edit 12: 1/14/15
Oliver is in critical condition. Although things have been serious since his birth, it has been much more so in the past few days.
Despite being on the ventilator, Oliver’s blood gases are still not good and his resp rate is high.
On the plus side, Oliver’s output is so great that he’s moved up to the next size of diapers (they are still way too big but more absorbent) and he is up to 2 lb 1 oz. There is still a lot of up & down and there’s really no way to know what the next hours hold, let alone the future.
Mini update: X-rays are showing haziness in Oliver’s lungs, which could be inflammation or fluid. They have called in an endocrinologist because blood tests have shown an impairment with his adrenal gland. More tests are needed to see if he’s low on cortisol; if so he will be given steroids which may help the lungs if it’s inflammation. Another reason he may not be doing well is the PDA can re-open, so they will be checking on that today too. With the increased need for bloodwork they will probably put in another arterial line. Any new procedure like that is of course an infection risk, but in this case, especially for a more accurate blood gas it is warranted. They want to see slow progress in the next few days. Oliver’s throat culture also came back positive for yeast so they want to make sure it’s not in his blood stream.
Edit 13: 1/15/15
Oliver is on an oscillating ventilator. Waiting on lots of test results today.
Edit 14: 1/16/15
Oliver is 2 weeks old today and weighs 2 lb 1 oz. He’s been having lots of desats (normal for a preemie but very scary) and will be on the oscillating ventilator for a while while he’s treated and recovers from the yeast/thrush in his airway/lungs. His blood gases have been better since being on the new vent. He’s become very “touch-me-not” and has spells when anyone touches him. That’s been so hard for Amii not to get to hold him, though sometimes a firm touch can comfort him during painful procedures.
He’s doing a bit better now that he’s had a blood transfusion. The echo showed a slight reopening of his PDA but they will just keep an eye on it for now.
Edit 15: 1/18/15
Oliver’s improvements are tiny little baby steps. He still needs a lot of assistance with the ventilator and probably will for some time. His blood gases look better and he has less of a murmur which indicates his PDA is probably closing again. Today’s chest x-ray showed a bit less haziness than yesterday’s but they did have to re-do his IV and place it in his head. That looks scarier than it actually is! They may be teeny Oliver size steps but I’ll take it.
Edit 16: 1/20/15
Oliver had another “two steps back” day today. They are taking blood gases every 30 minutes instead of once per day and his morning blood gas showed very high CO2 levels. Being on the ventilator long term can damage his lungs but at this point he needs to be on it and has been switched to a jet ventilator. His x-ray wasn’t great today either.
Right now they plan to monitor him for a few days and if he doesn’t show improvement they will take a closer look at his PDA and treat it more aggressively. Since medication isn’t as effective at this age, surgery would be on the table in the future.
Every decision the staff makes is balanced and triple checked, with benefits and negative side effects weighed. Amii knows Oliver is in the best hands and has the best chances with the staff in the Winchester NICU. We’re all hoping for better news in the coming days.
Edit 17: 1/21/15
Oliver, Amii & Guy are riding the preemie rollercoaster today. Oliver’s blood gases were getting better with the new vent this morning, they were able to bring Oliver’s O2 levels down from 55 to 32 and based on a better x-ray and stats, they think a part of his lung might be re-opening (though his PDA is still open more than they’d like). Unfortunately they rode back down the rollercoaster this afternoon as his O2 and CO2 levels worsened. Now, we just wait.
Edit 18: 1/22/15
Oliver has Bronchopulmonary Dysplasia and it’s pretty serious. The staff and Amii/Guy are discussing treatment with steroids, which have significant side effects, particularly for preemies. Here are some photos from today, including one of Oliver wearing a typical newborn hat.
Oliver will be 3 weeks old tomorrow! The good news is that Amii may be able to hold him this weekend but it takes two people to do it since someone has to hold the “jet pack” from his jet ventilator.
Edit 19: 1/23/15
Today is Oliver’s 3-week birthday and Amii got to hold him for the first time in about a week (Oliver loved it – no desats!) My eyes started leaking when I saw the photo – you can really see the joy on Amii’s face.
Today the discussion was transferring Oliver to UVA for surgery on his PDA. First they are trying another round of meds and IV nutrition and will re-evaluate on Monday.
Edit 20: 1/24/15
Oliver wore his first outfit today! The Little Sprout sent Amii a cute micropreemie NICU gown. Unfortunately Oliver couldn’t keep his stats up during kangaroo care, so they had to stop within a few minutes.
Other than having trouble when they tried to kangaroo he had an OK day. Few desats, better X-ray, o2 holding fairly steady at 32 percent. He got his new IV for his meds and TPN and fingers crossed he will improve!
Edit 21: 1/25/15
Today was a terrifying one for the Fritz family and the NICU staff. When they arrived today Oliver was having a spell that turned him blue. In addition to his PDA he has had blood in his stool so they are on Necrotizing Enterocolitis (NEC) watch. NEC is really scary, so much so that they stopped the meds for his PDA because they are contraindicated for NEC. They got home at noon & saw the big kids for a few hours before heading back. On a call with the nurse while at home, they found out his right lung just collapsed. They are trying to reinflate it and he’s back on antibiotics pending some cultures. She is so grateful for the neonatalogist who takes the time to answer questions in great detail -the staff is just amazing. Amii is trying to stay hopeful, but it just keeps going from bad to worse. She is really missing her big kids and Luna especially is really missing her. Today is the first time she got to see them since Friday and they are headed back to the hospital for the night.
Strangers have been sending her cards with their NICU stories and it is really meaningful to her to hear from people who have been in her shoes.
Edit 22: 1/28/15
The NICU staff is giving Oliver’s PDA another week before deciding whether to transfer him to UVA for surgery. They did another echo today vs. next week and are keeping a close eye on it. They are putting him back on meds for 36 hours and hoping for improvement.
They think the blood in his stool could be a milk protein allergy rather than NEC so we are hoping that is the case. No more dairy for Amii. He is still on the vent, had another blood transfusion yesterday and may have an infection (waiting on cultures).
Other than his PDA opening back up he’s holding steady. No great improvements but no huge steps back today either so that is a blessing. Amii got to sleep in her own bed last night for the first time since Friday. You never realize how much you miss your bed!!
Thank you to everyone who made the auction a success. Locals, head to the Blue Moon on 2/6 for a benefit concert!
Edit 23: 1/30/15
Amii & Guy leave Sunday morning for Charlottesville for Oliver’s surgery Monday. They plan to come back on Wednesday to spend time with the big kids before heading back to spend more time with Oliver. Positive thoughts for skillful surgeons and safe travels are appreciated.
Happy 4 week birthday Oliver!!
Edit 24: 2/2/15
Oliver’s surgery has unfortunately been delayed. He experienced another collapsed lung last night and has been having heartrate decels. They did blood and urine cultures to check for infection and pending the results, the hope is that he can have the procedure done at the end of the week.
Edit 25: 2/4/15
Oliver’s surgery is tentatively scheduled for 7-12 tomorrow. Amii got to hold him for about 2 hours today!
Edit 26: 2/5/15
Oliver’s surgery was this morning and he is doing well. Thank you for all the positive thoughts! Hopefully he will be able to be transferred back to Winchester next week so Amii and Guy can travel back and forth more easily and spend time with their big kids.
Edit 27: 2/6/15
Oliver is recovering pretty well! Amii got to see his face while they adjusted his ET tube. Hooray, he has a face! 😀 They switched him to a conventional vent from a jet ventilator so that’s a great step. He is 5 weeks old today and 2 lb 8 oz!
Edit 28: 2/8/15
Oliver is on the CPAP instead of a ventilator! Hopefully he’ll be able to tolerate the change and not take another step back. He’s showing feeding cues like sucking motions and hand to mouth which is fantastic. Amii is feeling like she, Guy and the NICU team made the right choice regarding the surgery.
Edit 29: 2/9/15
Oliver was reintubated late last night. He just wasn’t quite ready to step down to the CPAP.
The second part of this update has my blood boiling so I will keep it short. The insurance is currently refusing to transfer Oliver back to Winchester. Even if Amii & Guy were able to scrape together cash to pay for the transfer, they’d then refuse to pay for any further NICU care.
I’m typing and deleting, typing and deleting so I’ll just say please send positive thoughts for their appeal to be heard and get him back “home.”
Edit 30: 2/12/15
The request to transfer Oliver back to Winchester was denied again today. There’s another appeal in the works, but from what Amii heard from UVA, they are unlikely to budge. They are 4th on the waiting list for Ronald McDonald House. #BringOliverHome
Edit 31: 2/15/15
Oliver is off the vent and on the CPAP again and it looks like it’s going to stick this time! They did a round of low dose steroids first and it is going well. Third time’s a charm.
The bad news is that even though the resident physician (in one of the top NICUs in the country no less) says Oliver is fine to transport and UVA offered to cover the cost of transport, Coventry Care is still denying the transport back to Winchester. They claim he is “unfit for transport” which is untrue and never part of the “peer to peer” discussion. This leaves Amii 3 hours from home, paying for a hotel, her husband at home with the big kids and driving back & forth to be able to see Oliver on the weekends.
The NICU staff and UVA have done all they can and Amii is enlisting help from a local delegate and all of Oliver’s doctors to appeal yet again. If you have media contacts or anyone who could help, please let us know.
UVA is allowing Amii to try cloth diapers (hopefully it will help his contact dermatitis) and a huge thank you to Happy Heiny for sending their micropreemie diapers. UVA’s cafeteria food is also a small positive in all of this!
Edit 32: 2/17/15
Tomorrow there is a conference call between the resident at UVA, the insurance company and the neonatologist at Winchester Medical Center.
Amii finally received the reason for the denial. Oliver lost 70 grams last week (gained 30 back) and failed extubation (he is currently extubated and doing well.) I’ll reiterate that the physicians felt he was fine for transfer.
Amii and Guy are heading back to Charlottesville tomorrow after 2 days at home with the big kids. Fingers crossed that this conference tomorrow will go well and the insurance company will allow the transfer back to Winchester.
Edit 33: 2/19/15
The insurance company again denied the transfer back to Winchester. They claim it is because there is a chance Oliver could need surgery in the future and need to be transferred back to UVA. There has been no discussion whatsoever of future surgery between Amii and the physicians.
The WV insurance commission says the decision stands because it was a decision made between the insurance company and UVA/Winchester doctors, which isn’t true. UVA & Winchester doctors have done all they can to get Oliver transferred.
Amii needs to be close to Oliver to provide kangaroo care – it is so important to his recovery. Unfortunately it is incredibly expensive (and difficult) for Amii to be in Charlottesville.
Any well thought out letters to the insurance company, including benefits of breast milk and kangaroo care for preemies would be appreciated.
Office of Appeals Coventry Care West Virginia
Attn: Appeals – Expedited Request
500 Virginia St. East
Charleston, WV 25301
Edit 34: 2/26/15
Some good news today! Oliver is 3 lb 1 oz – that’s nearly double his birth weight!
He is on the nasal cannula for oxygen for 6 hours per day and may be off the CPAP soon if he continues to tolerate it well.
He’s made his first attempts at breastfeeding also. Grow, Oliver, grow!
Edit 35: 3/1/15
Awesome news today! Oliver is 3 lb 8 oz and off the CPAP! He’s on oxygen through the nasal cannula only. YAY!
Edit 36: 3/3/15
Oliver was moved to an open crib yesterday but had to move back to the incubator since he wasn’t able to regulate his temperature. His feeding tube was moved to his nose which is making it much easier for him to learn to breastfeed.
Oliver had an exam for retinopathy of prematurity (ROP) today, which showed “pre-plus disease and borderline stage 3.”
They’ll be repeating the exam every Tuesday and surgery may be in the future, therefore transfer back to Winchester is out of the question.
The hospital rate they were receiving at the hotel went up about 63% which is causing them a good bit of stress. Each time they reached the top of the Ronald McDonald House waiting list, the call came on a day they were heading home to see the big kids. They’re not sure where they’ll go from here.
Edit 37: 3/6/15
Oliver is 9 weeks old today and 3 lb 14 oz. He is doing well on a
2 liter high flow cannula! He moved back to the 3 liter, he wasn’t quite ready.
Edit 38: 3/10/15
Tomorrow Oliver will be sedated for Avastin injections to treat his Retinopathy of Prematurity (ROP) which has progressed aggressively. This will possibly be followed by laser surgery in 2-3 weeks and after he’s discharged from the NICU he will need to return to UVA for checkups every 2 weeks.
Positive thoughts for steady surgeon’s hands and a good outcome for Oliver’s vision are appreciated!
Edit 39: 3/11/15
Oliver’s procedure went well and he’s resting comfortably in a crib!
Edit 40: 3/19/15
Oliver had a rough day today. He had a choking episode at his noon feeding and had many bradycardia & desaturation incidents. He had two episodes where he turned blue and had to be turned upside down and given back thrusts
He’s been moved up to a 3L cannula and his CBC didn’t show infection. He’ll most likely have a chest x-ray tomorrow to check for aspiration or a collapsed lung.
On the upside, the NICU okayed using cloth diapers while Amii is there! A big thank you to Happy Heiny for sending some of their micropreemie diapers. Up On The Hill is now carrying the HH line so look for them soon. 🙂
Update 41: 3/21/15
Baby steps! Oliver moved back to a 2L flow on his cannula!
Update 42: 3/22/15
Oliver had his first bath today & has broken the 5 lb mark!
Edit 43: 4/1/15
This is not an April Fool’s joke! After a caffeine check, the countdown to Oliver’s homecoming will begin tomorrow!
Oliver is off the nasal cannula, off the ng tube, and tentatively may be able to go home on April 10th. He has to go 8 days with no apnea or bradycardia episodes and then Amii & Guy will need to do a 24 hour room-in the day before.
Cheering for Oliver!!
Edit 44: 4/2/15
Oliver’s “countdown” wasn’t able to start yet because his caffeine level was too high. (Which is OK because he had episodes today that could have restarted the countdown anyway!)
The countdown is set to start on Saturday, and his hernia surgery is tentatively scheduled for Wednesday.
If he can go 8 days with NO apnea/bradycardia episodes, he could potentially be home by his due date!
Edit 45: 4/3/15
Celebration yesterday was a bit premature. Eating & breathing on his own for 3 days has worn Oliver out. He’s back on the cannula and having a hard time with bradycardia episodes with eating and reflux. This may postpone his countdown.
On the positive side, Oliver passed his hearing test!
Edit 45: 4/5/15
Oliver is still very tired. He’s losing weight and his temperature is low. They are moving him back to a milestone 2 feeder so his NG tube will go back in. He needs to rest up for his surgery on Wednesday. They did a CBC and blood gas today and the blood gas came back OK.
Edit 46: 4/7/15
Oliver’s hernia surgery is scheduled for around 11 AM tomorrow. Please send positive thoughts for skillful surgeon’s hands and a peaceful recovery.
Amii needs to work on her swaddling skills. Swaddling ninja you are not. Sorry Amii. 😉
Edit 47: 4/8/15
Oliver made it through his surgery and is recovering. He is having lots of bradycardia and apnea episodes and will likely move back up to a high flow cannula. He needs to recover from surgery and make some improvements on feeding, then the team will discuss another countdown to heading home.
Edit 48: 4/13/15
Today was Oliver’s due date – he is 14 weeks 3 days old. If all goes well, he will hopefully be home within a week!
Edit 49: 4/14/15
Good news, Oliver passed his car seat test. His “countdown” did start over today so hopefully he’ll be looking at heading home in 8 more days!
Edit 50: 4/17/15
Oliver has a new tentative discharge date for the middle of next week. He has blown his countdown several times, so they have put him back on a daily dose of caffeine.
He will go home with an O2 tank, pulse ox monitor and apnea monitor. It’s like the Fritz family will have their own little NICU!
They are very excited to be nearing the end of their NICU journey, and a bit overwhelmed going home with a baby with SO many medical needs. Amii & Guy are trying to take a deep breath, and take Oliver’s care one day at a time.
Almost 15 weeks old having some quiet alert time!
Edit 51: 4/22/15
It’s one small step for Oliver but one giant leap into totally uncharted territory for the Fritz family. After the most nerve wracking car ride of their lives, Oliver and Guy finally brought Oliver home today.
The coming months and years hold many unknowns but they know it comes with multiple monitors, lots of anxiety and many, many specialist visits.
Here’s to an exciting, if a bit terrifying new adventure!
Amii has taken over new updates here. Subscribe to updates there for all the latest scoop on Oliver. 🙂