Matthew Evan Ard
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Matthew's Story
In April 2003, Chris and I happily discovered that we were expecting our second child. Generally speaking, my pregnancy ran a rather normal course. My morning sickness was worse the second time around but my weight gain was good. My child’s heart rate was always good and strong and he liked to stretch. I also got several well placed kicks in the bladder throughout my pregnancy. :-) There were however some key unusual events. I had my first ultrasound on July 10th. Overall, everything looked good. The doctor mentioned that the umbilical cord may be a bit short though he couldn’t be sure because doctors are rarely able to get the entire umbilical cord in view to offer a measurement. He also noticed that one of the child’s kidneys appeared slightly larger and perhaps held a little more fluid. I was told that this is very common in boys and generally just needs to be monitored but that it sometimes occurs with other issues in the child. He said that he did not see any of the other “markers” that would indicate the presence of other issues or problems. For a second opinion, he recommended another ultrasound by another doctor. On July 24th I had my second ultrasound. That doctor did not mention anything about the umbilical cord. She did notice the kidney but because it seemed to be working properly (we could see the bladder fill and empty) she was not concerned. She also noticed that the left hand of the baby seemed to be held in an unusual fixed position. She mentioned the possibility that our baby may have Downs Syndrome based on the kidney and hand observation. My Ob/Gyn disagreed on the basis that if structural abnormalities in the limbs were due to Downs, then the Downs syndrome would be considered severe and that heart and facial characteristics would also be noticeable. He did however recommend an amniocentesis to alleviate our fears. We considered it for the peace of mind that it might have provided but declined because of the risk of miscarriage. A third ultrasound, done on Sept 9th indicated that the kidney may still be an issue but otherwise all looked well. (My Ob/Gyn was unable to get a good look at the left hand to say if that was still an issue.) During one of my ultrasounds it was mentioned that there seemed to be more amniotic fluid than usual but that it was too early to tell. Aside from this, the only complication was borderline gestational diabetes. I did not need medication but was put on a precautionary diet. Looking back over the pregnancy, I would say that this child did not move quite as much as Nathan had in utero, though he always had the correct number of fetal movements/hour. Though we were concerned and had fears regarding the health of our baby, through much discussion and a great deal of prayer, we felt at peace.
At 36 weeks, I had a preterm labor incident. Medication was given to stop the contractions in an effort to buy the baby a little more time in utero. The medication worked for a few hours, then contractions started up again. Though the contractions got stronger and closer together, I wasn’t making any progress. After a few more hours, the contractions stopped on their own. At approximately 37 and a half weeks, my OB/Gyn was becoming concerned because my gestational diabetes was suddenly becoming significantly worse. After much thought and discussion, we agreed that labor should be induced.
So it was that November 20, 2003 was to be our dear child’s birth day. After a fast and uncomplicated 3 hour and 45 minute labor, Matthew Evan Ard entered into the world!!!!!!!!!!! Words cannot express how happy we were to have our second son with us. However, this is where we also truly began to worry. When my water broke, there was some meconium staining so as a precautionary measure, the neonatal intensive care team was present at Matthew’s birth. This was to ensure that the meconium wouldn’t be inhaled into Matthew’s lungs when he took his first breath. Everything went well in regard to that, however, they wished to take Matthew down to the nursery to further evaluate him because they had some additional concerns. I had been so looking forward to the hour after his birth that is traditionally set aside for Mom and Dad to be alone with their newborn to cuddle, nurse, and to get to know one another. But I knew that Matthew’s health was so very much more important than that so I consented. After holding him for a few brief minutes, away he went. Dad went with him for part of that time. During their evaluation they found that Matthew’s blood sugar was low and felt that he would fare better in the NICU (neonatal intensive care unit) for a short time. And this was the beginning of a long list of concerns and problems. It was also evident that Matthew did not have a suck, swallow, or gag reflex, had a large inguinal hernia, had abnormally low tone in his trunk and high tone in his arms and hands, his hands were contracted shut and his fingers overlapped, and his legs were just a little on the short side relative to his body. Matthew would need to stay in the NICU for a period of time though nobody could guess for how long.
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Week 1: Matthew’s blood sugar leveled out and no longer became an issue. Due to his lack of suck, swallow, and gag, he was initially fed via an IV. He also had a lot of blood in his stomach (possibly due to the labor and delivery) that the doctors and nurses were trying to get rid of. X-rays showed that all of the correct bones were present and formed correctly in Matthew’s hands and wrists. An x-ray was also done of his rib cage and though the doctors did not feel it caused any problems, they did note that his rib cage was narrower than usual and his ribs were shorter. An MRI of Matthew’s brain found no abnormalities. An echo test was done to check Matthew’s heart and again, all seemed fine there. The pediatric neurologist and geneticist made a tentative diagnosis of distal arthrogryposis (essentially meaning contracted hands) but did not feel he fit any one particular syndrome within that diagnosis. We also noticed that though Matthew liked to make little grunting noises (which he was very good at expressing his likes and dislikes through), he didn’t really cry. At most he would work himself up and give out a little squawk but that was it. It was at the end of this first week that Matthew had his first two of three apnea episodes. My parents were visiting him and he just all of a sudden stopped breathing. His O2 saturation in his blood plummeted and his heart rate started to fall. After rescue breathing, he rebounded. It happened again 5 minutes later and again rescue breathing was needed, and again he rebounded. During this week, Chris and a good friend administered a Priesthood blessing.
Week 2: An N-G tube was put up through Matthew’s nose and down into his stomach for feedings. Though his blood sugar was still fine, his sodium level in his blood serum was now elevated. This was treated and under control with water added to his feedings. Matthew was also having difficulty regulating his body temperature and still needed to be under the bed warmer. Occupational therapy fashioned some hand splints and began working with him to help stimulate his muscles in his trunk. Many tests were done on various parts of Matthew to determine if other issues were present. Tests included renal sonogram, a laryngoscope, an upper GI, a CPK (muscle test-I might have the initials wrong), a test to check for seizures, and others. All tests came back normal. At the end of the second week, Matthew had his third apnea episode, like the first two. As a precautionary measure, Matthew was put on CPAP for a few days. (And boy did he hate that!) There was a theory that the third apnea episode was due to the NG tube migrating up out of the stomach since that happened at roughly the same time, but doctors were unsure. For Thanksgiving, volunteers had made cards and painted little onesies as pilgrims, turkeys, and scarecrows to give to the babies in the NICU. Matthew was an adorable little scarecrow.
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Week 3: Matthew was able to be weaned off of the CPAP. On December 10, Matthew had surgery to put in a G-tube for feedings, to correct what turned out to be a bilateral inguinal hernia, and to take a muscle biopsy and skin biopsy. All seemed to have gone well during the surgery. We were told that Matthew’s connective tissue was a little on the fragile side which made the hernia repair a little difficult but that was it. Because of the anesthesia during the surgery, Matthew had needed to be put on a ventilator. After a few days on the ventilator to recover from the surgery, they tried to extubate. They were met with severe respiratory distress and Matthew needed to be put back on the ventilator. At this point, doctors were guessing that Matthew had a form of degenerative muscle disease. The muscle biopsy would help in determining if that was the case. In addition, two DNA tests were sent off to Baylor/Mayo Clinic: one for spinal muscular atrophy (SMA), one for myotonic dystrophy. Both the muscle biopsy and DNA tests would take up to 4 weeks to get back. Doctors began trying to prepare us for the possibility that Matthew might not get better, but rather worse. Needless to say, this was an extremely heart wrenching time. Research into the various theories yielded scary possibilities. We were extremely scared and worried about our precious little boy. But at the same time, we doubted the doctors. Yes, there were several symptoms that seem to match with those diagnosis but several key ones did not. Aside from his breathing difficulties, Matthew seemed stronger. He was gradually moving more and interacting more with his environment. And genetic components were not present in either Chris’ or my family.
Week 4: A central line (Boviak) was put in to avoid excessive needle sticks. (Because Matthew was a term baby with a good amount of baby fat, nurses and doctors were having a very hard time getting IV’s in and blood for tests.) Results from the spinal muscular atrophy tests were received and were negative (yeah!). On December 16th, we had Matthew transferred to Cook Children’s Hospital in Fort Worth. We had been told that this was one of the best hospitals in Texas. Though we had been happy with Matthew’s care at Medical Center of Plano, we felt that it might help to have a new team look at Matthew - a fresh set of eyes that might see something different. Once there, a second extubation trial was done. I was told that Matthew struggled for an hour and then again fell into severe respiratory distress. A possible theory was given of laryngotracheomalacia, a condition which means that the cartilage in his airway is too soft and therefore his airways collapse when he breathes. If this was severe enough, a ventilator would be necessary for Matthew’s entire life. This was again a very hard time and a low point in the road for Chris and me because this time we could see that this was very much a possibility. A third extubation attempt was planned with a pulmonologist present to perform a bronchoscopy at the same time in hopes of seeing what the problems were and where they were located.
Week 5: A repeat MRI still showed nothing abnormal. Endocrine testing was done because the sodium levels in Matthew’s blood still needed to be regulated with extra water in the feedings. The excess sodium refers to a condition called diabetes insipidus. Results found that it was his pituitary gland in his brain that was not doing its job. Strangely (but gratefully) enough, shortly after the testing was done, this condition spontaneously resolved. Also, results were received from the myotonic dystrophy DNA test and muscle biopsy and both were normal (yeah!) It was also around this time that Matthew began to really do well at regulating his body temperature. (He had periods before were he would come off of the warmer but he would often need to be put back on.) And lastly, Matthew began having a gag reflex! It wouldn’t take long before his gag reflex was good and strong!
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Week 6: For Christmas, we dressed Matthew up in a “Baby’s First Christmas” outfit and took pictures. We also assured him that there would be Christmas presents for him when he got home! We were told by a nurse one day that Matthew sucked on his pacifier with help!!! This was a good sign that Matthew was starting to develop his sucking. The third extubation was attempted and again was not met well. But the test results from the bronchoscope turned out to be good news. It turned out that Matthew did not have the laryngotracheomalacia. There were only two spots in Matthew’s airway that were causing problems and both of them were above the voice box. The primary problem was low smooth muscle tone. The pulmonologist recommended a tracheotomy in hopes that Matthew would be able to come off of the ventilator and breathe on his own. He was also optimistic that the trach would be temporary (though it may still be in for several years). An improvement in muscle tone would solve the problem or sometimes just growing helps because the airway naturally expands.
Week 7: On January 2, Matthew undergoes his second surgery. This one is to have the trach put in and to have the g tube replaced with the g button covering. The surgery goes very well. 4 days later, Matthew comes off of the ventilator and breathes on his own! YEAH! A few days later, he is moved to the transitional care unit where we begin learning how to care for Matthew’s needs.
Week 8 and 9: Chris and I learn what we need to care for Matthew, particularly the trach and G-button. Though initially scary, the trach care is not nearly as hard as we had thought and feared. Matthew continues to thrive and grow. On January 22 we are able to take Matthew home!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Since he has been home, Matthew continues to do well. He has continues to work on sucking on his pacifier and has even been able to hold it on his own for a few seconds. He has also developed a technique for sucking on his upper lip. Lately we have also been able to hear him swallowing. It is currently not frequent enough to manage his saliva or a feeding but it is most definitely progress! His movements have continued to improve and he kicks and waves his arms just like babies should. He has also improved GREATLY on his trunk tone and is currently doing very well with his head control. He is able to lift his head and look around at the world around him. His hands have also relaxed some and gained some range of motion.
We feel so very very blessed to have Matthew in our family. He is such a sweet, special boy. He is also stubborn - he has to be to have made it so far! We look forward to each day with him and hope he continues to make such wonderful progress. We are also so very grateful for the strength and blessings given to us from our Heavenly Father as well as the support from family and friends during this rough time.
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Last updated February 8, 2004 (age 11 weeks)
