Upon waking up that Sunday morning we noticed his face and bedding was covered and matted with spit up through his nose and mouth. He was taken to the nursery to be cleaned up, and when our nurse checked his vitals she discovered that his temperature was only 90 degrees. It was also discovered that he was born without a uvula, and with a soft tissue cleft palate, which caused him to spit up. He was rushed to NICU 1, and was tested from head to toe: genetics, infection, ultrasounds, etc. Meanwhile we were sent home with Lola who appeared to be fine at the time, however two days after being discharged her temperature dropped to 92.5 degrees at home, so we rushed her to the ER. She too was then put under a warmer, administered what appeared to be the tiniest of IVs, and a lumbar puncture (spinal tap) was performed to rule out infection such as meningitis (since low temperature can be a sign of infection). She was admitted to the Children’s Hospital where we stayed for two days monitoring her temperature and making sure she was eating properly.
￼Lola in The Children's Hospital
Jack was moved to NICU 2 within several days, which was a great sign of improvement! On day five of him being in the NICU Lola’s nurse came into our room at the Children’s Hospital that evening (the Children’s Hospital is on the same campus as the NICU, but in a different wing of the hospital) stating that I needed to go over to the NICU because Jack was bleeding from his penis, which turned out just to be a skin irritation from the diaper. His platelet counts were low (50,000 with 150,000 being normal), so he received a transfusion. Thankfully on day six Lola was discharged, and has been thriving ever since, but before we left I walked over to see Jack and leave some milk. Upon entering the NICU I was informed that he had tested positive for MRSA, and would be placed in isolation with red tape on his door. This would require us to suit up with a gown and gloves for each visitation.
￼Jack finally got moved out of the incubator into an open bed two days before discharge!
Jack remained in the NICU for a total of 43 days. Most of that time was spent trying to regulate this own body temperature, and working with a Speech and Occupational Therapist for feeding therapy. He hardly has a suck reflex so we feed him with a special bottle, and in a certain position to avoid choking. As of 7.3.17 Jack just visited the Pediatric Cardiologist where he was given a clean bill of health in that respect. Interestingly he has a Superior Left-Sided Vena Cava which is a common congenital venous anomaly only seen in 0.3-0.5% of the normal population. He still has some appointments with specialists later this month (genetics, ENT, neonatal development clinic, BabyNet evaluation to determine speech and occupational therapy needs). We also know that Jack will have corrective surgery on his soft tissue cleft palate in the near future, but we won’t know those details until the ENT visit.
As of 7.6.17 Jack and Lola are both approaching 9 lbs!
Asking for help and especially money is extremely difficult and humbling for us. We are your typical middle-class family with both parents working a full-time job living paycheck-to-paycheck that can rarely afford a family vacation. We both have mediocre private insurance through our jobs that costs us approximately $800 per month for a family of six. We of course do not qualify for any type of government assistance, but we have applied for institutional Medicaid, SSI and a hospital sponsor of Jack.
As of 7.6.17 our medical bills received to date equal $6,008. We have yet to receive Lola’s ER visit and two days in the Children’s Hospital, nor have we received the NICU bill.
We can sign up for monthly payment plans, however they require a 20-25% deposit for each bill, and then a monthly payment for each. Unfortunately, we cannot pay the required minimum monthly payment x 7 different bills. Of course, they will not combine them because the fees go to different departments or third parties.
Therefore, we have come to you all for assistance. We completely understand if you cannot donate to this GoFundMe, so at the very minimum we ask you to PRAY and SHARE this campaign. We have faith and believe that God is our ultimate healer and provider!
- Mary Ross
- Don and Mary Smith
- Ann Bailey
- Kerri Griffith
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