Ocean’s Relief fund

We have had a rough journey to get to this point. Our daughter Ocean was born at 33/34 weeks premature. My pregnancy was filled with tons of complications and bumps in the road. Ocean had a rough start spending 22 days in the NICU for many breathing issues eating issues and a few other things including a heart defect having two smallholes in her heart and a seizure disorder. After finally getting to bring her home we had many continuous issues with her breathing and complications with her turning purple and blue.

 

On June 1st Erika took Ocean and Gage to a joint doctors appointment. Everything was going fine Gage got his vaccines and it was onto Oceans part of the appointment. After discussing her eating issues and lack of weight gain Dr Peoples turned the subject to the oxygen. Asking if we had been able to turn down the oxygen at all. After being told that in fact the oxygen had been turned up and that she was changing colors multiple times a day immediately Ocean was admitted to the PEDS unit at St. Charles Bend. It was so serious Erika couldn’t take Gage to anyone she had to have her Mom rush in to come get Gage from COPA and go directly to the hospital.

 

Originally the hospitalization was just to stabilize her breathing and to make sure she was getting the correct amount of oxygen. After being admitted they did what is called a blood gas test. The test showed toxic levels of CO2 in Oceans blood. She then was transferred with in an hour to the NICU at St. Charles Bend. She was put onto a Neonatal positive pressure ventilation machine. This machine breathes for ocean and forces her to breathe and exhale pushing out the CO2 correctly to correct her levels and make her less toxic to herself.

 

With in 2 hours at the NICU they decided they were not equipped enough to help Ocean. They called in the life flight team to take her to Portland. But the life flight was unable to come because a helicopter had been in an accident prior. So all choppers income and outgoing were grounded. They ended up sending an ambulance in the middle of the night to come take her to Portland. Mom and dad headed over the mountain separately so they could take Gage everything he needed while they were gone and to grab as much stuff as they could to have for the stay.

Ocean was born with a seizure disorder so they thought was it was either the seizures causing the issues or that her heart is causing issues. She also has obstructive apnea and another type of apnea. But the apnea doesn’t happen when your awake so that wasn’t what was causing this issue.
 
After arriving in Portland they did a lot of tests. We have ruled out seizures as a cause. She is on a good dose of medication and no activity was seen on the EEG. They performed an Echocardiogram of her heart. Oceans holes in her heart look to have closed but now she has a malformation of her heart valve. That is not what is causing the issues though.
 
Ocean has been changed from being on the Neonatal positive pressure ventilation machine to now she is on high flow oxygen at a rate of 8 liters per hour and 30% oxygen. To put it in perspective when Ocean came home she was on oxygen at 0% and 1/8 liters an hour. That is 64 times more per hour than what she was receiving at home. Though she is on this super high rate her body is still not expelling Carbon dioxide correctly. You can see it in her blood work being elevated.
 

Ocean also has been put back on a feeding tube. Struggling to breathe is making her unable to stay awake to eat. Also they want to limit the calories she spends trying to eat. The NG tube goes in her nose to her stomach delivering nutrition without her having to struggle to eat. 

Now to where we are at right at this moment. The hospital doctors have now decided they think Ocean has a genetic condition. This condition is called Congenital central hypoventilation syndrome (CCHS). This condition will make her need a vent to breathe for her a lot of the time while she is sleeping. This can be a life long issue and she will need a tracheotomy tube placed in her neck to help machines to breathe for her. This will involve cutting a hole in her neck and plastic tubing placed inside to help establish the airway permanently. We don't know much about the condition but it wasn't on the first panel of genetic testing we did. We have not been able to meet with a doctor to discuss any of it either yet. This condition is extremely rare and the doctors have to reach out to a special hospital and specialist doctors that deal with it. There are only two in all of United States and it is so rare they are saying only like 1600 people have it.
 
This all being said the financial strain on the family is about to become overwhelming. Back and fourth from Bend to Portland every week for dad so he can return to work. Then for mom to see Gage is going to become hard. The extra added food expenses also are adding up, Randall’s doesn’t have a parent plate program and they limit what mom can order as a breastfeeding parent so they have to compensate with food from the cafeteria. Thankfully lodging has been completely covered, the Ronald McDonald House has been an amazing resource.
 
Many people have messaged asking how to help both times Ocean has been in the hospital and it is hard to answer that question when it is asked. We really didn’t know how to answer it either. We made it through the first stay but we were never able to rebound from the last hospital stay to get caught back up on life. We decided to open this fund to give those who want to help relieve some strain an avenue to do so. Right now we are looking at at least another two weeks in the ICU, then there will be a press stay. Possibly a lot more time if what they think it wrong with Ocean isn’t actually what is wrong. If it is what is wrong then there is the time to get her stable and teach the family how to use the tracheotomy vent system added on as well.
 
Thank you everyone for reading, if you don’t have the means to help it’s not imperative. Instead of you could please please please send us some positive vibes. We need an abundance of those currently. Ocean is a little fighter and trying her hardest. 

Venmo is @edub74
Phone number 4229
Cash app is $EDubStar

 

Ocean is in room 510 at Randals Childrens Hospital 
Family is at Ronald McDonald House Portland East House Room#225

 

We can receive mail at RMH. We have used this service to order small items off of Amazon they have a great system in place. Addressed to Ocean if you want to send a card or something for us to put up in her room. 

We also can have visitors but please call or message ahead of time. Absolutely no one is allowed to visit with any type of sickness or stuffy noses. No allergies nothing please be in good health. We would love to see you also if you want you can also FaceTime, mom is going to be here all alone this next week and could probably use some non nurse/doctor social Interaction.