Becoming a parent has been the greatest feeling and priviledge we could have ever imagined. My wife and I were blessed with a beautiful baby girl, Ruth Olivia, on Monday, May 19, 2014. Unfortunately, she has been hospitalized since that day, and is scheduled to have surgery on Tuesday, July 15th. Ruth was diagnosed with Type A Esophageal Atresia (second most common type). Esphogeal Atresia occurs in about 1 in 4000 live births, with type A occurring in 8% of those cases. That means 1 in 50,000 live births, a child will be born with Type A.
We have been transplanted from our home to be with our daughter while we wait for her to have and recover from surgery. Medical bills are currently in the 100’s of thousands, but we are hopeful the insurance company will work with us on payment. Early indications are good, but there will still be many out of pocket costs to pay. In addition, we have seen an increase in expenses related to us temporarily living in San Francisco. Though our housing has been covered at the Ronald McDonald house, we have limited space for groceries and have been eating out a lot. Cost of living is much higher there than Petaluma. Transportation costs including parking, gas, bridge tolls, and bus fees have added up.
We are hoping that you will be able to help support us during this trying time.
Abel, Jessica, and Baby Ruth!
For those of you interested in a little more detail….
We were lucky that this was discovered while my wife, Jessica, was pregnant. After about 30 weeks, Jessica was noticing a lot of water retention and bloating. Her belly grew rapidly from this point, leaving us to think there were twins in there. Her doctor had her do an ultrasound a few weeks later and discovered an alarming amount of amniotic fluid. In addition to this, the doctors were unable to view the stomach of the baby filling up. This meant the baby was not swallowing amniotic fluid, only producing it. Without her taking any in, the fluid level increased to a level about 5 times the average (a condition called polyhydramnios). A second ultrasound was ordered with a specialist and he had the same diagnosis, Esophageal Atresia. At this point, we were sent to California Pacific Medical Center in San Francisco to discuss this with the High Risk pregnancy team and the pediatric surgeon. After about 8 hours of meetings, we came up with a plan of action. We would come in a week later to induce labor, but when that day came, the doctors decided to wait another week to have the baby grow more. However, they did not want us to leave San Francisco, as the baby would need to be born at that hospital. If we were to deliver in Santa Rosa as planned (1 hour north), she would have had to be transported by medical transport to SF anyway.
The social workers at CPMC were able to arrange for us to stay at the Ronald McDonald house for the week, and the foreseeable future. We went into the hospital on the 18th and they doctors began the induction process. A few hours, Jessie’s water broke and labor began. Though the contractions were not too painful for Jessica, we were seeing the baby was in distress. About 1pm on the 19th our nurse came in and told us that we may need to consider alternate forms of delivery (c-section). Before we had time to process this information the doctor came in and told us that we would need to get the baby out ASAP…We were in the OR by 2pm and the baby was born at 2.37pm PST.
Since that day, Ruth has been in the Newborn Intensive Care Unit (NICU). At two days old, she went into surgery to place a G-Tube into her stomach for feedings. In addition, a suction tube was placed into her mouth to suction out any saliva and mucus, otherwise she would choke on it and possibly get fluid in her lungs.
For the most part, Ruth has been happy and feeling good. We had a scare when the stitches keeping the G-Tube in place came undone. Fortunately, the tube is designed with a balloon tip to keep it from coming out.
At this point, she is scheduled to go into surgery on the 15th of July. If all goes well, the surgeon will be able to attach her stomach to her esophagus. Typically X-rays done a week before will show the distance between them, but because she has no reflux, the contrast solution did not cover the entire stomach and they were unable to get a clear picture. The Surgeon has told us she will still go forward with the surgery. She is confident that the distance will be close enough to connect, but there is always a chance that it is not. In this case, they will suture the two ends together to stretch out the esophagus. In a few weeks, they would go in connect them.
If all goes well, the baby will recover for about 10 days before they begin trying to feed her orally by bottle and a new Mic-Key button (replaces G-tube for feeding). This will be a slow process, to make sure the esophagus has healed and does not have any breaks. They will do this for a couple of weeks. After that, they will attempt to have Jessica breastfeed her. We can only hope she picks this up quickly. With any luck, we will be home 2-3 weeks after that!
We really appreciate all of the emotional support we have been given over the last 8 weeks and hope you can help us financially as well.
Abel, Jessie, and Baby Ruth
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