Peter Domenic Eduardo was born on Tuesday September 18th at 9:55pm. His weight was 5lbs 15oz with a length of 20 inches, a long and narrow little guy. We were relocated to the mother and baby unit to rest and recover. Peter proved to be very tired and didn’t show much interest in feeding. On Friday 9/21 it was decided Peter would need to go to the Neonatal Intensive Care Unit or NICU for short, to be evaluated closely. In those first few days in the NICU many tests were run, all coming back with favorable results yet no diagnoses. Peter would spend only minute’s awake over a 24hr period and fall asleep at the beginning of his nursing sessions with Mama. This was a difficult time as we were expecting to be home with our other two girls Capri and Luciana. Clearly something wasn’t right and there were no answers. The only thing we knew (and still the only thing we know) is Peter was exhibiting signs of weak muscle tone in his truncal areas, or truncal hypotonia as they call it. Hypotonia is a neurological symptom that causes difficulty for muscles to remain contracted. What this means for Peter is his head is very floppy, he has trouble with sucking and swallowing and trying to use the affected muscles is very tiring, the nurses often said he is burning more calories trying to nurse than he is consuming. To supplement Peter’s feeding he was hooked with a Nasal Gastro or NG tube that enters his nose, travels down his esophagus and enters his stomach. We try to nurse him or bottle feed him and when he tires out the rest of his feeding goes into the tube, at least we know he is getting sustenance. A positive note here, we only had to supplement with formula a couple of times until Nina’s milk came in and now he is exclusively feeding on breast milk.
The hardest part of all of this, we still don’t know what is causing Peter’s hypotonia and Nina can’t be with the girls and Peter at the same time. Many blood tests, ultra sounds and an MRI have been completed and Peter has passed all of them. His vitals are OK, his breathing is unassisted he just has a lower than normal breath rate.
There are some positives that should be mentioned. During delivery Peter experienced a cardiac deceleration necessitating the need for vacuum extraction. He came out sunny side up with the cord around his neck, we are lucky he is with us. Despite the traumatic labor/delivery the Doctors don’t think they are a factor in his current issues.
The outlook for Peter The future for Peter is not written. Something is causing his Hypotonia/poor feeding. Some of the tests that have been ordered will not provide results for a couple of weeks. The NICU staff at SMH have been amazing and supportive. SMH does not see many cases like this so they have recommended we transfer him to John Hopkins All Children’s Hospital in St. Petersburg. Peter will transfer up there on Monday October 1st. This will be logistically difficult as it is 45 minutes away; we have to give Peter the best chance for recovery. Right now it looks like one of two paths: Either Peter continues to make gradual improvements with stable vitals and is able to have surgery to implant a tube that goes from the inside of his stomach to the outside of his body, a G tube, allowing us to bring him home OR his improvement accelerates and he is able to go home once he can get through his feedings without supplement from a tube.
Since the first few days in the NICU Peter has shown signs of improvement. He is waking up on his own for some of his feedings and staying awake for up to an hour. He still needs supplements from the tube but he is getting a little more consistent, sometimes finishing half of a bottle before tiring out. It seems like bottles work better than breast feeding, my theory is being held in a breast feeding position, hearing mommy’s heart beat and being so cozy just puts him right to sleep. Thankfully Nina is a rockstar breast milk producer and her supply exceeds what Peter needs.
Our support network is unbelievable. Offers to help are pouring in from family and friends, so much so it was overwhelming at first. Family and friends have come together and helped us with meals, provided emotional support, offered to help with the girls and contributed to our GoFundMe campaign.
Why do we need a GoFundMe?
We have initiated a GoFundMe to help with expenses for Peter’s current and future unknown medical needs. Everyone probably knows Nina is a stay at home mother and now she is dedicated most of her time during the day to taking care of Peter. I needed to take leave from work to help my family and while I am grateful leave is available to me, it is unpaid leave. Also, our insurance plan ends on September 30th and all deductibles and out of packet maximums will reset.
If you would like to help, the best thing is companionship, support and prayers. We have a meal train set up and if you would prefer you can support through the GoFundMe
CaringBridge is a nonprofit social network dedicated to helping family and friends communicate with and support loved ones during a health journey. Learn more about CaringBridge.
