September 2009
My name is Jeremy Glunt and I am a proud father of our first born Levi Joseph born on the 25th of August 2009 (4lbs 8oz and 16.5 inches long). My girlfriend Renee was on birth control when she found out that she was pregnant which was a complete shock to the both of us. Everything initially checked out fine and we began to prepare ourselves with becoming parents. At around five months Renee went into the Doctor for her routine check up and the Doctor was concerned about Renee's size and shortage of amniotic fluid (oligohydramnios). She seemed a month behind and the Doctor then gave us the shock of a possibility of chromosomal issues. The next few months we spent going through agony and seeing specialist. The specialist did not see anything on the advanced ultra sounds except that he was a little behind the growth curve and that he had small deposits of calcium in his abdomen (Levi was very active in the womb and had adequate blood flow). She gave us a lot of hope and Renee soon went back to her regular Doctor. At 36 weeks the Doctor noticed issues with Levi's heart rate during the stress test. The following day Levi was delivered by C-section.
During the C-section Renee had some anxiety issues and they ended up giving her a sedative which calmed her down, but made Levi extra sleepy when he was delivered. He was breached and the cord was wrapped around his neck twice. The APGAR scored one at one minute, six at five minutes, and a nine at ten minutes. He did not cry for the first four to five minutes and even after a quick cry he seemed very lethargic. The Doctor's were concerned about some markers (Pronounced head, Divot on left ear, Curved fifth fingers, Single palmar crease on right hand, Small penis, Ascended testes, Scrotal Webbing, Overlapping second and third toes on both feet, spinal septic defect, and Anemia NOS (Hematocrit in the NICU was low and Levi was put on Poly-Vi-Sol with Iron). They immediately took him to the NICU and put him on oxygen. With in minutes he was breathing room air. They took blood for the chromosome test and evaluated him regularly. Physical therapist, Occupational therapist, Speech therapist have all evaluated him and said he was fine. Cardiac examination findings were ventricular septal defect (VSD), which is small and they think he will grow out of it. His Lungs, Kidneys, and Liver have all checked out fine. The Urologist evaluated his genitalia and found that it was normal size but the penis was recessed and webbed to the scrotum. He said it was a simple surgery to fix and at that time he would be able to perform the circumcision (the surgery is scheduled for August 2010). They were beginning to think that everything was fine and that all of the markers were from being restricted in the uterus and being premature. He has began nursing and bottle feeding and doing pretty good with both, his latching and sucking for the most part was very good. After the first week he was up to four feedings a day (nursing and bottle), while the rest were completed by nasogastric tube feeding. He does seem to gag at times and I notice while holding him that he seems to struggle when breathing at times. The doctors and nurses say its due to premature and that it will get better.
After eight days in the NICU we received the results back from the chromosomal test. He was diagnosed with XXXXY Syndrome. After the initial shock and grieving we both decided as parents it was time to go to work. We have been blessed with wonderful doctors, nurses, and others whom have helped us find information about his syndrome. We love little Levi so very much and are very worried for him. We do not know what to expect or what we should do to help his development. We have been so happy to have found this site and look forward to communicating with all of you.
Levi is now 2 months old; 7 pounds and 20 inches long. He's doing very well and recovered from a cold that the whole family came down with. We have had a struggle with his feeding (choking and fatigue), but after a swallow study and OT we are narrowing in on the problem. We are also in the works of scheduling an MRI on Levi's spine due to possible tethered spinal cord.
Story Submitted by: jeremy_renee@yahoo.com