Thursday, September 24, 2015

September 24 - Dear Nicholas Sparks (Guest Bloggers Mark & Beth Fogelgren)

Dear Mr. Sparks,

In late June 1998 our OB doctor observed that Beth's stomach was too large for the gestational age of the baby. This condition known as polyhydramnios is the result of extra amniotic fluid. At this point our OB felt that an in depth ultrasound was needed by a perinatalogist. On July 1, 1998, 28 weeks gestational age, Michael was diagnosed with Congenital Diaphragmatic Hernia (CDH) from the perinatalogist at Va. Beach General Hospital. We came home devastated not knowing what to do or where to go. Mark got on the Internet and began doing research and found the CHERUBS support group. He sent out a message requesting information from anybody. We received 30 plus responses within the next 2 days.

Those responses along with discussions with our OB, Perinatalogist and the Neonatalogist at Children's Hospital of the Kings Daughters (CHKD) convinced us we should not deliver Michael at any of the local hospitals. All of the sources said we needed to deliver in an ECMO (extra corporeal membrane oxygenation) facility. The closest facility for us was UVA Medical Center in Charlottesville, VA. We contacted some friends in the area to stay with and of course had to get permission from the (HMO) insurance company to be referred to UVA. Prior to leaving, we established an e-mail prayer network with over 100 families and friends. Through our family's entire ordeal we knew that thousands of prayers were being lifted up to the Lord on a daily basis. This network reached across the world to three continents.

We left Va. Beach on August 3, 1998.Beth had her first doctor appointment at UVA the following morning. This began a 6-week wait for the C-Section delivery of Michael. Each Monday we would go to the hospital for an amnio, in order to check for surfactant in his lungs. Each time the index number was not high enough to induce labor. The last week before delivery, Beth received steroid shots but the index number still did not increase. Delivery was scheduled for Tuesday, September 8, 1998.

Michael Christian was born at 12:01pm, 9lbs. 6oz. and 21 inches long. At birth both lungs collapsed, his left was the best and the right one was smaller than normal. Michael was put on ECMO when he was 15 hours old, because of pulmonary hypertension, a condition in which blood does not flow well through the lungs. He stayed on ECMO for 21 days, during this time the surgeon fixed the hernia on the right side of his diaphragm with a gortex patch the size of a fifty-cent piece. Also, the ECMO canullas wouldn't go in the correct place in his neck vein. Many attempts to correct the blood flow to the ECMO machine failed. The surgeon performed thoracic surgery twice in a 10-hour period before the ECMO pump would work properly. As a result of these ECMO problems and the need to infuse saline into his blood stream, Michael became swollen to an indescribable size, his ears and eyes all but vanished. Because of the thoracic surgery and the need for blood thinning drugs to prevent blood clots in the ECMO machine, Michael started to bleed into the sack around his heart. This again caused more problems with blood flow to ECMO. Michael's swelling was so bad that weeks later his nurse told us that she didn't think he would survive. The bleeding from the chest surgery went on for several days, with some days bleeding more than 1 pint per day. But once the ECMO machine and the related blood thinner was removed, the bleeding stopped within an hour. We calculated that Michael used 5 gallons of blood product while on ECMO, through the circuit changes and blood transfusions.

We thought we were out of the woods once Michael was off ECMO, but within 24 hours, he had to be placed on Nitric Oxide gas because of pulmonary hypertension. He was on this gas for 27 days. Again we were told weeks later by his doctor that he had not seen a child survive that showed signs of pulmonary hypertension after ECMO. Finally, when he was 7 ½ weeks old he was extubated from the ventilator and we got to hold him for the first time. We had the best smiles that day from everyone, but
think Michael's were the biggest. The next 3 weeks would be spent weaning him from the narcotics and attempting to teach him to drink from a bottle. Both were very hard. We all left the hospital on November 20, 1998, 75 days after Michael was born. He was released though still on 75 ML of oxygen and with an NG feeding tube for supplemental calories. We drove straight home to VA Beach. Within 3 weeks of Michael's homecoming he was taken off of oxygen and his feeding tube. We kept him at home for the most part until the end of April, because we didn't want him to catch a cold, virus or RSV from anyone.

We made monthly trips to CHKD to receive synogis shots to prevent RSV. Michael did have one more surgery in March 1999 to rewire his sternum together. Because of 2 thoracic surgeries his breastbone did not fuse back together properly. Just two days after this surgery, 2 of the 3 wires placed around the bone broke again. The surgeon said we would just wait until he is older. Michael was behind with his motor skills, but with the help of physical therapy and the early intervention program he caught up by the age of 9 months. Michael is such a blessing; we refer to him as "Michael the Miracle Baby."

Michael's parents, Mark & Beth Fogelgren (Virginia)

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