Zachary Joseph Borst
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Zachary was born on October 6, 2001, at 27 weeks gestation with a birth weight of 790 grams (1 lb. 12 oz.). Unfortunately, the NICU at Loyola University Medical Center (Maywood, IL) has been his home for most of his life. At the time of his birth, he was noted to be extremely premature with Trisomy 21 (Down Syndrome). Zachary’s initial problems included respiratory distress syndrome and duodenal atresia (blockage of the small intestine). He required ventilator support from the time of birth and as a result, he has severe BPD
(bronchopulmonary dysplasia or chronic lung disease).
He had surgery to correct the duodenal atresia only after being able to gain enough weight. This was a slow 3-month process because his nourishment came from an IV line only. The weight requirement was needed to have a good chance of not only accomplishing a successful surgery, but also having a better chance of making it through the surgery process itself. The surgery appeared to be successful, yet only a few weeks later, Zachary seemed to have trouble with the same sort of symptoms that originally required the surgery. After numerous tests and consultations, the doctors came to the conclusion that there was another intestinal blockage. This was good because we knew what the problem was, but bad because he would have to go through another surgery. By now, it’s around Christmas time and we’re hoping that this is the end of the worries. Perhaps he could finally be weaned off the respirator and we could start thinking about going home.
It took several tries of being extubated and intubated before Zachary was finally weaned off the respirator. He was sent home (Feb. 21, 2002) on what seemed to be endless medications, a nasal cannula with continuous oxygen flow, and an NG tube.
We, as parents, fought every minute of the day to keep him home, yet that only lasted approximately 5 weeks. Zachary was re-admitted for respiratory distress, but discharged because he recovered from that episode. Five days later, he stopped breathing and we were forced to call 911 to have him re-admitted.
That was April 2nd. It is now August 16, 2002 and he is still in the hospital. Since April, Zachary has needed a tracheostomy in order to stabilize his breathing and a G-tube (along with a partial fundoplication to help his reflux) in order to feed him. Recovery from the trach surgery took longer than usual. There was a nickel-size hole under the stoma and we had to wait for that to granulate. After ENT did a
bronchoscopy, they discovered that he has tracheomalacia and mild
bronchialmalacia. Zachary also has had several infections to overcome, whether hospital borne or from other sources, and had fought off pneumonia a couple times. He still continues to fight day after day. We are told that he will be ventilator-dependent for awhile.
Zachary is now 10 months old and weighs 16 lbs. 2 oz. Despite all that he has gone through so far, we have never seen a happier baby. He smiles all day long and he loves to roll over onto his tummy. He thinks it’s the coolest thing. We’re hoping to be lucky enough to take him home soon. His current discharge date is September 4th. We will keep you updated.
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Update – November 4, 2002 - Zachary has been home exactly two months and is doing well. He turned one year old on October 6th and at 21 lbs., you would’ve never guessed that he was a 1 lb. 12 oz. preemie a year ago! Although he is still ventilator-dependent, the pulmonologist has switched the vent mode to a more challenging setting. He is currently on CPAP, which challenges him to primarily breath on his own with pressure support. Also, his oxygen requirement has decreased tremendously. It appears that Zachary is moving in a positive direction. We know that the bitter cold winter of Chicago is just around the corner so we need to be extremely careful in order to keep Zachary as healthy and germ-free as possible. He has come a long way already in the past couple months with the help of all the people involved: his physicians, the respiratory therapists, the nurses (especially his associates from the NICU who, even being home, still give us continuous support!), his special friends and family. We are very thankful to them all.
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Halloween 2002
Update - July 18, 2003 - We have great news! Zachary has been off of oxygen for 18 days now, although he is still on the ventilator 24 hours a day. Also, he is improving, both medically and developmentally. He is not crawling yet but when he's in the crawling position, he either moves his legs or he pivots in circles with his hands. Although, if you count crawling backwards, he would be doing great!! He can finally sit on his own but we have to "put him there". And if he's not in the mood to sit, he will either fall backwards or sideways. Another new thing he does is wave his hand(s) "hi" and "bye".
He is still tube-fed on all feedings but we have been working diligently (with the help of a speech therapist) to feed him by mouth. His oral aversion has improved but he does not know how to swallow. Also, when you come near him with a spoon, he thinks it's funny to do raspberries. And if we're lucky enough to get a little bit of food in his mouth, it's not a pretty sight. We are considering buying a face shield!
Another challenge we are up against is his hearing. An audiologist diagnosed him with a moderate to severe mixed hearing loss (which involves both a sensorineural and a conductive component) in the right ear and a severe to profound mixed hearing loss in the left ear. We have been meeting with her almost every week to work on adapting him to a hearing aid. Zachary will also be adding another therapist (a hearing therapist) to his list of "home visitors". She will work with all of us on communicating through sign language.
Overall, Zachary is doing pretty well. He managed to survive his first Chicago winter season at home (outside of having the stomach flu in January) and a couple of surgeries in the months of January and June (ear tubes, circumcision, laryngoscopies, bronchoscopies and removal of granulation tissue by his trach). He's become such a regular at Loyola's O.R. that they know him by his first name.
It is really difficult to adapt to the special care of a medically-fragile child even if you've been doing it for quite awhile. There are always visitors coming in and out of your home. It's like living your life in a fishbowl. Also, transporting a baby on a ventilator is not an easy task although we have just acquired a mini-van, which I call our mini-ambulance. Because we have been home for almost 11 months now, we do have the hang of things. The next thing we would like to work on is a somewhat normal life. With that, we are currently planning a trip to the zoo in the fall. By the way, need we mention that Brookfield Zoo is only a few miles from Loyola's
PICU?
Update - September 20, 2003 - We didn't think the next update would come so soon but we couldn't hold back the latest news. Two weeks after our last update, Zachary started crawling. He can also sit up on his own now, unassisted! On August 12th, we began weaning him off the ventilator during the day. Currently, he is vent-free twice a day for 2 hours each. It took almost two years for our baby to be unattached to wires, tubes and other medical equipment. Even if it's only 4 hours a day right now, we are loving every minute of it and so is he! He loves to crawl where there are no limitations to how far he can go. And if you remember our last update, we were planning a trip to the zoo?!? Well, we've been there four times already and even managed to go to Lake Geneva, WI., on Labor Day. That is the farthest we have ever gone with Zach and it was everything we hoped it would be, our first real trip together as a family!
- New Pictures of Zachary Sept 2003
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Halloween 2003
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Update - June 1, 2004 - It's been over 8 months since our last update. We have so much to share with everybody. In October, Zachary celebrated his 2nd birthday with his friends (both old and new, including some of his favorite nurses from the NICU) and family. We released 50 balloons in his honor and for all children with special needs and/or Down Syndrome
(www.nads.org). It was a very special day for our family and we thank everybody who was able to share it with us.
Medically, Zachary is only on the ventilator during the night (YEAH!!!!). His daytime weaning was a huge success. It took some time but it was definitely worth the wait. It's just one step closer to a normal life. Now that the winter season is over, his pulmonologist would like to start the nighttime weaning. If we take it slow, we are confident that Zachary will do just fine. We'll keep you posted on his progress. In March, a pediatric orthopedic doctor diagnosed Zachary with kyphosis, a spinal disorder. He prescribed a Thoracic-Lumbar-Sacral Orthosis (TLSO). (In plain English, it is simply a back brace). He also prescribed Supra-Malleolar Orthosis (SMOs) for his feet, to provide ankle stability during standing and walking.
Developmentally, Zachary is doing well. His speech therapist has been working on adapting him to a PMV (Passy-Muir Tracheostomy and Ventilator Speaking Valve) which enables him to vocalize (see
www.passy-muir.com for more information). He is in the cooing stage right now and it is so wonderful to finally hear his sweet little voice. Zachary still does not take any food orally but he is coming along with his speech/oral/feeding exercises. His speech therapist is confident that he is ready for a swallow study in a few weeks. Zachary is not walking independently yet, but he can pull himself up to a standing position and take steps while holding on to something. He can also crawl up the stairs, too. The first time his physical therapist tried it, Zach went straight to the top. We think he was secretly "practicing" on his own because this was a huge surprise to all of us!
Zachary has grown into such a darling little boy with a wonderful personality. He is always happy and playful, not to mention quite active! As his proud parents, it is a joy for us to see the progress he has made. He has come such a long way and we are blessed to have him in our lives. Each year, our life as a family gets better. Last year, we went to Lake Geneva, WI for a one-day trip. This year, we are going back during the July 4th weekend. This time, we are staying over (as in sleeping over at a place other than a hospital!). Of course, we did our homework… the fire and police department are across the street from the Abbey Resort and the nearest hospital is only 10 minutes away. It's always nice to be prepared! With the summer season arriving, we have lots of activities planned. We are looking forward to showing Zachary the world and visa versa… Keep an eye out for our next update!
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Update, December 20, 2004: Christmas is just around the corner and so is the New Year. We hope this update finds you and your family happy and healthy as you celebrate the holidays. Since our last update in June, we have lots to share with everybody. This year has been a very exciting time for Zachary as he had experienced a lot of "first-time" things…. "real" tub baths, playing on the swing at the park, splashing around in a swimming pool (of course, it was only filled with 3" of water because of his trach), going on his first weekend away at Lake Geneva, WI., playing in the sand at the beach, going to his first Wiggles concert, riding on the merry-go-round, seeing the animals at the Lamb's Farm petting zoo, playing in the pumpkin patch & going on his first pony ride at Goebbert's pumpkin farm, trick-or-treating, visiting with Santa at the mall and most importantly, starting preschool in October.
Zachary turned 3 on October 6th and no longer qualifies for Early Intervention. He is now able to attend preschool through our school district. After two long extensive/intense IEP (individualized education program) meetings with a large team consisting of his teacher, a psychiatrist, therapists, case workers, social workers, program supervisors, audiologist, his respiratory therapist and of course, us the parents…. we decided as a team that NIA's program would best suit Zachary. This is an out-of-district, community-based functional program for children who are deaf or hard of hearing. They utilize total communication (simultaneous use of sign language and speech) to instruct their students. His teacher and the rest of the staff are doing a wonderful job teaching Zachary the social and developmental skills he needs to function in society. Socially, he is getting used to "little" people under 3 feet tall. Developmentally, Zachary is getting more and more independent. He is able to take a few "unassisted" steps on his own (the record is 10 right now!). He is starting to communicate more through facial expressions and signs that he has made up. Because he is getting quite good at mimicking, we know that once he starts to comprehend the signs that are taught to him, he will do great.
Medically, the nighttime weaning off the ventilator did not go as well as everybody had hoped. Due to a couple setbacks, we have postponed this until the spring. The good news is Zachary still remains off the ventilator during the day and only needs supplemental oxygen when he is sick. Regarding his feeding issues, Zachary had a swallow study done that clearly showed he was not quite ready for oral feedings. He is still strictly on g-tube feedings, although he is definitely showing improvement with his oral aversion. Rather than throw a fit every time he sees a spoon come near his mouth, he is now giving us "permission" to approach him. He will actually smile and put his mouth up to the spoon. This is huge progress for Zach! We continue to work with the PMV (Passy-Muir speaking valve). He tolerates it ok but needs more work on the coordination of breathing and vocalizing. As for the kyphosis, he wears his TLSO (back brace) for a minimum of 6 hours a day. He rarely uses his SMO's (ankle-foot orthotics) as his ankle stability is just fine without them. As for his hearing loss, he has been tolerating his hearing aids but he loves to pull them out and throw them across the room!
Zachary continues to amaze us daily with both his determination and strong will to survive. Yes, there are still the ongoing challenges/struggles of raising a child with both medical and developmental needs, something only families in this similar situation can understand. BUT…. to wake up to Zachary's smile every morning, it makes all of these challenges well worth it! With that, we remain truly blessed to have him in our lives.
We would like to extend our special thanks to Cynthia Bissell for giving families like us the opportunity to share the stories of our beautiful children on this wonderful website. (Cindy, you are a godsend! Thank you for everything!!!). And we wish everybody a wonderful holiday season and a safe & Happy New Year!
- New Pictures posted Jan 2005
