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The Waiting Game Continues

-- preemie --- choo-choo-------------------

When Thomas was born, we were told that preemies tend to go home around their due date. As Thomas' November 6th due date approached, it became apparent that he would not be going home that soon.

Things were going well and there were fewer and fewer concerns. He was gaining weight, gradually improving every day and looking and acting more and more like a normal baby. The two key concerns were his eyes and his oxygen requirements.

-- preemie --- choo-choo-------------------

As is common with extremely premature babies, Thomas had ROP (Retinopathy of Prematurity). It is thought that the early exposure of the eyes to oxygen can cause them to mature improperly (as just a lay person, I may not have this right). This can cause varying degrees of visual impairment. Fortunately, many advances are being made in the treatment of ROP.

Thomas, at one point, was scheduled for laser surgery to avoid a detached retina due to his ROP. Just days before, sufficient improvement was discovered and the surgery was canceled. Thomas was seen by a specialist for a short period even after he was released from the hospital. Fortunately, no lasting vision problem has been detected as of a year later.

The other concern was his oxygen requirements. Early on, Thomas' BPD (Bronchopulmonary dysplasia) was treated through intubation on a respirator. As his lungs matured, he was able to go off the respirator. However, the respirator and even the CPAP were a necessary but unnatural means of keeping the lungs working. After the respirator and CPAP were no longer required, months of oxygen therapy was necessary to allow the lungs to mature and heal from the previous treatments.

Again, understand that I am not a doctor, so I may not have all of this right.

The goal at this point in Thomas' treatment was to lessen his oxygen requirements to enable him to go home. Mostly it was a long waiting game.

Our families and friends were very supportive through this period, as well as throughout the entire hospitalization and it's aftermath. Thomas' grandparents visited the NICU as often as they could, as did his aunts and uncles. Their support was and is important to us.

Although we were permitted to bring in other visitors, we felt we should limit visitors to immediate family. We did this both to expose Thomas to fewer outside germs and also to avoid having to explain what was happening within the NICU environment. Although you become accustom to it, first visits to an NICU are shocking. Most people will not and should not see anything like it.

We also appreciated the camaraderie that formed between us and many of the other NICU parents. We were asked not to inquire to much about the other babies, families, etc., but you can't spend four months some place seeing many of the same faces on a regular basis without forming some type of relationship.

I remember congratulating parents upon hearing of release dates, improvements, etc.  I also remember some very bad days in the NICU I don't want to talk about.

Note:  Thomas was preemie in 1994, as good as his care was then, I'm sure treatment of preemies has advanced much further

-- preemie --- choo-choo-------------------
-- preemie --- choo-choo-------------------