Zoe Beth Burroughs
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Zoe Beth was born on January 26, 2004 - 14 weeks before her due date. She weighed 1 pound 15 ounces and was 13.5 inches long. Zoe Beth spent 154 days in the NICU of North Texas Hospital for Children at Medical City in Dallas, TX. During her stay in the NICU, her main complication was BPD or chronic lung disease. It took almost 2 months before the doctors felt that Zoe Beth was ready to try to move from the ventilator to CPAP. After several failed attempts at extubation (some of them planned and some initiated by Zoe Beth extubating herself), the doctors noticed that it was getting increasingly more difficult to get her intubated again. Her doctors suspected narrowing of her airway and scheduled a bronchoscope when Zoe Beth reached 1500 grams.
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After the bronchoscope, the ENT diagnosed her with subglottic stenosis or narrowing of the airway. He decided to perform a cricoid split to try to widen the airway and avoid a tracheostomy. During this procedure the cricoid ring of the trachea is cut and a larger ET tube (3.5 mm) is inserted as a stent. Zoe Beth remained sedated and paralyzed for 10 days following the surgery in order to let the split heal correctly. After those 10 days, she was taken back to the OR to see if the surgery had been a success. Everything seemed to look good with the trachea healing well and, of course, larger. She did have a small piece of granulomous tissue near the vocal cords, so the ENT used a laser to "vaporize" it. After another view days, a planned extubation was scheduled. Zoe Beth decided she did not want to wait that long and extubated herself. She was then moved to CPAP.
Amazingly, Zoe Beth was not on CPAP but a few days and then moved to a nasal cannula. She seemed to be doing well, and her doctors estimated just a few more days on oxygen. Then she started to develop stridor. It got progressively worse throughout the day, so the ENT was called in to do another scope. He let us know that his "best guess" for the stridor was probably inflammation from reflux, but he would know more after the scope. After the scope, the doctor had a difficult time intubating Zoe Beth - to the extent that he classified it as critical that she not extubate herself again since they could barely get a 2.0 mm ET tube in and feared that they would not even get that in the next time. The ENT's recommendation was to trach her immediately. This came as quite a blow to us as we thought Zoe Beth had avoided the "dreaded" trach. After the surgery, the ENT let us know that he was not sure what caused her new open airway to close up again, but like he stated before, his "best guess" was that it was reflux.
Zoe Beth adjusted to her new trach much better and quicker than mom and dad did. She seemed to breathe much easier. Now we moved on to the next hurdle - feeding. Zoe Beth was not completely oral avert at this time, but she definitely did not progress as quickly as we all hoped. After 3 weeks of trying to bottle feed her, she was barely taking one feeding by bottle. In order to get her home faster, the doctors suggested she have a g-tube put in. She also had an Upper GI done to assess her reflux. After discovering that she had mild reflux, her doctors recommended that she have the nissen surgery at the same time that the g-tube was put in.
As always, Zoe Beth handled the surgery very well. It was discovered during the surgery that Zoe had a malrotation of her small intestine, so the surgeon had to take all of her intestines out and put them back in the right way. While he was at it, he also removed her appendix for good measure.
Now we could see the light at the end of the tunnel. Her doctors let us know that as long as there were not any further complications from the surgery, Zoe Beth was ready to go home. On June 28, 2004, after 5 months and 2 days, she was discharged from the NICU on a CPAP machine and oxygen.
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The next three months were "interesting" to say the least. Our family has adjusted to 24 hour nursing care and a mini NICU in our baby's bedroom fully equipped with all the alarms and beeps that we had gotten used to in the hospital. Zoe Beth finally decided around the first of August that she was done with the CPAP machine. Although she would have probably benefited from another few weeks on, she would have no part of it. Due to this rather early and unexpected abandonment of the CPAP machine, Zoe Beth's oxygen requirements went up. Slowly we weaned her down to minimal oxygen only at night while sleeping. During this time, Zoe Beth also grew very oral avert. She would not take anything by bottle and had also given up her pacifier.
August 23-27, 2004 we traveled to Cincinnati, OH to have Zoe Beth evaluated by Dr. Robin Cotton and his Aerodigestive team. We were directed to him through many referrals and research. Dr. Cotton is considered "the expert" on diseases of the airway. Many patients travel from all over the US and the world to be evaluated by his team. Although Zoe Beth is not ready to have the reconstructive surgery yet - the doctors recommendation was to have her get through her first winter and also improve her pulmonary function - we felt completely comforted that Dr. Cotton feels that she will be a surgical candidate in the future. He diagnosed her with Grade IV Subglottic Stenosis (meaning that her airway is completely occluded).
Early next spring, we will again make the journey to Cincinnati, OH to be reevaluated by Dr. Cotton and his team. Zoe Beth will have the many tests and scopes done again to see if she is ready for reconstruction. It is our hope that she will be ready then, and the surgery scheduled shortly after. We know that this could be a very long process, depending on the type of reconstruction Zoe Beth needs as well as the need for possible follow-up surgeries if the graft does not work or if the scar tissue returns, but we are comforted to know that she is in excellent hands.
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For now, we continue to watch Zoe Beth thrive, grow, and do "normal" baby activities. We have "outings" to her many doctor and therapy appointments and she has gotten to know her two "doggy sisters". Although we know the chances are very high that she will return to the hospital with an infection during these next few months, we pray for an uneventful winter.
Chris & Leslie Burroughs
Also, Zoe Beth's has her own web page at www.zoebeth.com.
